Patient Participation

PHSO – Labyrinth of Bureaucracy. Follow-up report to the November 2014 Patients Association report on the Parliamentary and Health Service Ombudsman (PHSO) – March 2015

Posted on March 18, 2015. Filed under: Patient Participation |

PHSO – Labyrinth of Bureaucracy. Follow-up report to the November 2014 Patients Association report on the Parliamentary and Health Service Ombudsman (PHSO) – March 2015

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Expert patients – Reform – 10 February 2015

Posted on February 13, 2015. Filed under: Patient Participation | Tags: , |

Expert patients – Reform – 10 February 2015

Expert patients – media release

“Reform today publishes new research exploring how patients can be more engaged in their health and more involved in their healthcare. The report argues greater patient engagement could both improve outcomes and reduce costs.”

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Public Reporting in health and long-term care to facilitate provider choice – European Observatory on Health Systems and Policies – 18 November 2014

Posted on November 20, 2014. Filed under: Patient Participation | Tags: |

Public Reporting in health and long-term care to facilitate provider choice – European Observatory on Health Systems and Policies – 18 November 2014

“Promoting and enabling choice in publicly-funded health and long-term care services has gained popularity in many countries over recent decades, as it can empower individuals and bring about improved care and outcomes as providers compete for business.

But for choice (and competition) of care provider to live up to its potential, people need good comparative information about care providers to make informed decisions.

In the policy summary authors review the literature on the measurement and reporting of quality information, provide insights to support future investment in public reporting systems, and summarize strategies aiming to increase the use of reporting by patients and users.

The policy summary is targeted at policy-makers, care providers and information developers. The evidence will be helpful for them in creating reports more likely to be used and valued by patients and users when choosing health or care providers.

This summary was published as part of a European Commission project, the European Union Cross-Border Care Collaboration (EUCBCC).”

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A quick guide to person-centred care – The Health Foundation – October 2014

Posted on October 31, 2014. Filed under: Patient Participation | Tags: |

A quick guide to person-centred care – The Health Foundation – October 2014

“Despite a growing recognition of the need for care to be more person-centred, there remains a gap between the commitment to a person-centred approach and the reality on the ground.
Person-centred care is hard to define. Instead, we have identified a framework that outlines its four main principles.
There is a strong argument for adopting more person-centred approaches, including improved clinical and health outcomes, better value for money and happier patients and health care staff.”

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Implementing strategies in consumer and community engagement in health care: results of a large-scale, scoping meta-review – BMC Health Services Research – 18 September 2014

Posted on October 14, 2014. Filed under: Patient Participation |

Implementing strategies in consumer and community engagement in health care: results of a large-scale, scoping meta-review – BMC Health Services Research – 18 September 2014

Abstract

Background
There is growing recognition of the importance of the active involvement of consumers and community members in health care. Despite the long history of consumer and community engagement (CCE) research and practice, there is no consensus on the best strategies for CCE. In this paper, we identify various dimensions of CCE-related strategies and offer a practical model to assist policy-makers, practitioners and researchers.

Methods
We undertook a large-scale, scoping meta-review and searched six databases using a list of nine medical subject headings (MeSH) and a comprehensive list of 47 phrases. We identified and examined a total of 90 relevant systematic reviews.

Results
Identified reviews show that although there is a significant body of research on CCE, the development of the field is hindered by a lack of evidence relating to specific elements of CCE. They also indicate a diverse and growing enterprise, drawing on a wide range of disciplinary, political and philosophical perspectives and a mix of definitions, targets, approaches, strategies and mechanisms. CCE interventions and strategies aim to involve consumers, community members and the public in general, as well as specific sub-groups, including children and people from culturally and linguistically diverse backgrounds. Strategies for CCE vary in terms of their aim and type of proposed activity, as do the methods and tools which have been developed to support them. Methods and tools include shared decision making, use of decision aids, consumer representation, application of electronic and internet-based facilities, and peer support. The success of CCE is dependent on both the approach taken and contextual factors, including structural facilitators such as governmental support, as well as barriers such as costs, organisational culture and population-specific limitations.

Conclusions
The diversity of the field indicates the need to measure each component of CCE. This meta-review provides the basis for development of a new eight stage model of consumer and community engagement. This model emphasises the importance of clarity and focus, as well as an extensive evaluation of contextual factors within specific settings, before the implementation of CCE strategies, enabling those involved in CCE to determine potential facilitators and barriers to the process.

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Shared Decision-Making Strategies for Best Care: Patient Decision Aids – Institute of Medicine discussion paper – 18 September 2014

Posted on October 1, 2014. Filed under: Patient Participation | Tags: , |

Shared Decision-Making Strategies for Best Care: Patient Decision Aids – Institute of Medicine discussion paper – 18 September 2014

“In Shared Decision-Making Strategies for Best Care: Patient Decision Aids, the authors suggest concrete steps to fully integrate the ideals and practices of shared decision making (SDM) into routine clinical practice. The discussion paper, published by the Institute of Medicine (IOM), is a product of participants in the IOM’s Evidence Communication Innovation Collaborative. The authors identify key steps to shift expectations and behaviors of patients and clinicians: certifying decision aids, establishing measurement standards for SDM, using health information technology to facilitate information exchange, and expanding the role of employers and payers in supporting certified decision aids. In support of these steps, the authors summarize their views of the compelling case for implementing SDM, and underscore the potential benefits.”

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Building Health Literate Organizations: A Guidebook to Achieving Organizational Change – UnityPoint Health – 2014

Posted on August 8, 2014. Filed under: Patient Participation | Tags: |

Building Health Literate Organizations: A Guidebook to Achieving Organizational Change – UnityPoint Health – 2014

Abrams MA, Kurtz-Rossi S, Riffenburgh A, Savage BA.

“A health literate health care organization is described as easier for people to use, and critical to delivering patient-centered care (Ten Attributes of Health Literate Health Care Organizations). It supports patient-provider communication to improve health care quality, reduce errors, facilitate shared decision-making, and improve health outcomes.

This guidebook will help health care organizations of any size engage in organizational change to become health literate. It complements many excellent health literacy resources, helping you use them effectively and reliably. It includes background, resources, examples, and lessons learned to help build a health literate health care organization.”

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Healthwatch England strategy 2014 – 2016

Posted on August 4, 2014. Filed under: Patient Participation | Tags: |

Healthwatch England strategy 2014-16

Healthwatch England Business plan

“This is the first strategic plan for Healthwatch England and sets out how, by working together, the Healthwatch network will truly champion the interests of those who use health and social care services. The accompanying business plan outlines what Healthwatch will be working on from April 2014 to March 2015.”

Healthwatch England: the way forward

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Health Literacy: report from an RCGP-led health literacy workshop – June 2014

Posted on August 4, 2014. Filed under: General Practice, Patient Participation | Tags: |

Health Literacy: report from an RCGP-led health literacy workshop – June 2014

“Health Literacy is needed for patients and the public to understand and act upon health information, to become active and equal partners in co-producing health, and to take control of their health to help shape health environments and health services for themselves, their families and their communities.

In view of the importance of health literacy to patients and the NHS, NHS England sponsored a meeting, hosted by CIRC in collaboration with Dr Gill Rowlands, the Chair of the SAPC Health Literacy specialist group.

The aim of the meeting was to facilitate discussion about the important principles around health literacy relevant to primary care. Central to the discussion was a shared understanding of what is meant by the term ‘health literacy’ and to formulate a number of recommendations.

Low health literacy is a problem for everyone, even in the least deprived areas there is still a significant proportion of the population that cannot understand health materials. Through the Health Literacy Report the College is urging the medical profession to avoid using medical jargon when speaking to patients about their health.

In addition to learning about health literacy and its impact on patients, the public and the NHS, those present brought their perspectives and expertise to the discussions. Several themes emerged and can be found the report.”

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The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review – Journal of Participatory Medicine – June 2014

Posted on July 30, 2014. Filed under: Patient Participation |

The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review – Journal of Participatory Medicine – June 2014

“Summary:

Objective: Despite the growing acknowledgement of the value of engaging patients in their health care, the term “patient engagement” is at risk of becoming nothing more than a “hot buzz phrase,” as it lacks a shared definition and, consequently, shared guidelines for interventions. The aim of this study is to identify the main conceptualizations associated with the expression “patient engagement” within the current academic literature. In particular we highlight different disciplinary points of view and changes in its conceptualizations across the last 12 years.

Methods: Five electronic databases were searched from 2002 to 2013 with no language restrictions (included MEDLINE; PsychINFO; CINAHL;Web of Science; and SCOPUS). A qualitative software-based thematic analysis was performed on papers dealing with the concept of patient engagement retrieved by a systematic review of the literature.
Key Findings: Searches yielded 1020 articles, of which 259 studies fulfilled the inclusion criteria. The conceptualization of patient engagement is still vague and has changed over time, thus offering a fragmented and partial vision of this phenomenon. The current literature focuses alternatively on different and singular aspects of the patient engagement phenomenon while missing the whole picture of the elements that may hinder or facilitate patient engagement.

Conclusions: These results underline the urgency for a deeper understanding of what patient engagement means in order to develop knowledge useful for innovation both in clinical practice and health policy agendas.”

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Guidance on implementing the Friends and Family Test – NHS England – 21 July 2014

Posted on July 24, 2014. Filed under: Patient Participation | Tags: |

Guidance on implementing the Friends and Family Test – NHS England – 21 July 2014

“NHS England has published new guidance to support the introduction of the NHS Friends and Family Test (FFT) to NHS funded services and GP practices. A summary of the guidance for GP practices is also available.

NHS England has engaged with NHS providers, patients, the public and insight experts in carrying out a review of the methodology and implementation of the FFT after the first six months of national data collection.

The new guidance has been informed by this review and the work of a number of pathfinders.”

… continues on the site

NHS England news release: Friends and Family Test set for roll out to all NHS services – 21 July 2014

 

 

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Institute of Medicine. Health Literacy and Numeracy: Workshop Summary. Washington, DC: The National Academies Press, 2014

Posted on July 22, 2014. Filed under: Patient Participation | Tags: , , |

Institute of Medicine. Health Literacy and Numeracy: Workshop Summary. Washington, DC: The National Academies Press, 2014.

ISBN 978-0-309-29980-0

“Description

Although health literacy is commonly defined as an individual trait, it does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals’ capacities and the health literacy-related demands and complexities of the health care system. Specifically, the ability to understand, evaluate, and use numbers is important to making informed health care choices.

Health Literacy and Numeracy is the summary of a workshop convened by The Institute of Medicine Roundtable on Health Literacy in July 2013 to discuss topics related to numeracy, including the effects of ill health on cognitive capacity, issues with communication of health information to the public, and communicating numeric information for decision making. This report includes a paper commissioned by the Roundtable, “Numeracy and the Affordable Care Act: Opportunities and Challenges,” that discusses research findings about people’s numeracy skill levels; the kinds of numeracy skills that are needed to select a health plan, choose treatments, and understand medication instructions; and how providers should communicate with those with low numeracy skills. The paper was featured in the workshop and served as the basis of discussion.”

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Patients for Patient Safety (PFPS) – WHO

Posted on July 14, 2014. Filed under: Patient Participation, Patient Safety | Tags: |

Patients for Patient Safety (PFPS) – WHO

“Patients for Patient Safety (PFPS) is a programme that brings together patients, providers, policy-makers and those effected by harm, who are dedicated to improving health-care safety through advocacy, collaboration and partnership. Millions of patients around the world are suffering every year due to preventable harm in health care and PFPS believes that safety will be improved if patients are placed at the centre of care and included as full partners.”

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Framework for personalised care and population health – Dept of Health [England] – 4 July 2014

Posted on July 8, 2014. Filed under: Patient Participation, Public Hlth & Hlth Promotion |

Framework for personalised care and population health – Dept of Health [England] – 4 July 2014

“Resource to support nurses, midwives, health visitors and AHPs to access best evidence for practice and deliver their public health role.”

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Closing the Gap through Changing Relationships: evaluation An independent evaluation of the programme – The Health Foundation – June 2014

Posted on July 8, 2014. Filed under: Patient Participation | Tags: |

Closing the Gap through Changing Relationships: evaluation An independent evaluation of the programme – The Health Foundation – June 2014

“The Health Foundation’s Closing the Gap through Changing Relationships programme was launched in 2010. The programme funded seven projects, which aimed to change one or more of three types of relationships:

between the individual using a service and those who work in healthcare provision
between people using services and the wider healthcare system
between communities and the wider healthcare system.

This is the report of the programme evaluation carried out by the Office for Public Management (OPM). They were asked to look at

how and whether each of the projects led to relationships changing;
how change was experienced by the different actors;
the key barriers to, and promoters of, success.”

… continues on the site

 

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Patient, manager, expert: individual. Improving the sustainability of the healthcare system by removing barriers for people with long-term conditions – College of Medicine – 17 June 2014

Posted on June 25, 2014. Filed under: Chronic Disease Mgmt, Patient Participation |

Patient, manager, expert: individual. Improving the sustainability of the healthcare system by removing barriers for people with long-term conditions – College of Medicine – 17 June 2014

Recipes for Sustainable Healthcare

“A new Sustainable Healthcare Report led by the College of Medicine and AbbVie, with the support of health organisations and expert patients, was launched at the House of Commons on Tuesday 17th June.

The report makes recommendations for how the delivery of NHS care can be made more sustainable and help to improve outcomes for people living with long-term conditions.

Nearly 15 million people in England have a long-term condition such as diabetes, heart disease, dementia or asthma which in turn account for half of GP appointments and two thirds of outpatient and A&E visits. If the NHS can improve the support provided to those living with long-term conditions then not only will patients get better outcomes but the service will also benefit from important financial efficiencies.

Part of the mission of The College of Medicine is to work with health organisations, practitioners and patients to share evidence and experience that will shape future healthcare models.

The Sustainable Healthcare Report makes 12 recommendations for change across three areas:

1) Embedding a person-centred approach, which considers the individual rather than a siloed focus on their condition(s)

2) Helping patients to navigate the healthcare system and manage their condition with confidence

3) Using technology to improve the delivery of services and care closer to home and equipping patients to self-manage.”

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Key concepts in consumer and community engagement: a scoping meta-review – BMC Health Services Research – 13 June 2014

Posted on June 24, 2014. Filed under: Health Libnship, Patient Participation |

Key concepts in consumer and community engagement: a scoping meta-review – BMC Health Services Research – 13 June 2014

doi:10.1186/1472-6963-14-250

“Abstract (provisional)

Background
Although consumer and community engagement (CCE) in health care is receiving increasing attention, research and practice in this area is hampered by the variability of concepts and terminology commonly employed. This scoping meta-review aims to identify key CCE concepts and examine terminology used to describe them.

Methods
In a scoping meta-review, an extensive list of 47 phrases and 11 Medical Subject Headings (MeSH) was used to undertake a comprehensive and systematic search in PubMed Central, Embase, EBM reviews, CINAHL, APAPsycNET, and Scopus.

Results
59 systematic reviews met the selection criteria and were included in the final analysis. The analysis identified nine different concepts related to CCE: shared decision-making, self-management, CCE in health care systems, community-based health promotion, providing access to health care, rehabilitation, participation in research, collaboration in research design and conduct, and peer support. The identified concepts differ from each other in many aspects including the aim of the activity, the role of consumers and the type of professionals’ involvement. Each concept was described by a range of terms, with some terms shared by different concepts. In addition, two overlapping concepts of patient-centeredness and patient empowerment were recognised.

Conclusions
This study describes CCE-related key concepts and provides new insight into their relationship with different CCE-related terms. Identification of key CCE-related concepts and terms will be useful to focus future studies and initiatives and enhance production of CCE-related evidence.”

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Registries for Evaluating Patient Outcomes: A User’s Guide 3rd edition – AHRQ – April 2014

Posted on June 19, 2014. Filed under: Patient Participation, Patient Safety, Research | Tags: |

Registries for Evaluating Patient Outcomes: A User’s Guide 3rd edition – AHRQ – April 2014

Agency for Healthcare Research and Quality (US)

“Excerpt

This User’s Guide is intended to support the design, implementation, analysis, interpretation, and quality evaluation of registries created to increase understanding of patient outcomes. For the purposes of this guide, a patient registry is an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes. A registry database is a file (or files) derived from the registry. Although registries can serve many purposes, this guide focuses on registries created for one or more of the following purposes: to describe the natural history of disease, to determine clinical effectiveness or cost-effectiveness of health care products and services, to measure or monitor safety and harm, and/or to measure quality of care.

Registries are classified according to how their populations are defined. For example, product registries include patients who have been exposed to biopharmaceutical products or medical devices. Health services registries consist of patients who have had a common procedure, clinical encounter, or hospitalization. Disease or condition registries are defined by patients having the same diagnosis, such as cystic fibrosis or heart failure.”

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Prioritising person-centred care – the evidence – National Voices [UK]

Posted on June 17, 2014. Filed under: Patient Participation | Tags: , |

Prioritising person-centred care – the evidence – National Voices [UK]

“In these pages you can find the evidence from 779 systematic reviews of ways to make person centred care happen.

We provide accessible and accurate information so commissioners, health professionals and service-user groups can see what works best and how to invest time and resources.

Person-centred care involves placing people at the forefront of their health and care. It ensures people retain control, helps them make informed decisions and supports a partnership between individuals, families and services.

Some of the main components of person-centred care involve:

• supporting self-management
• supporting shared decision-making
• enhancing experience of healthcare
• improving information and understanding, and
• promoting prevention

These pages summarise the highest quality evidence about what works in each of these areas. ”

… continues on the site

Evidence for Person Centred Care – National Voices [UK] – Media release

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Making it Easy: a health literacy action plan for Scotland – 3 June 2014

Posted on June 11, 2014. Filed under: Patient Participation | Tags: |

Making it Easy: a health literacy action plan for Scotland – 3 June 2014

Full text

 

ISBN: 978-1-78412-511-0

“• Highlights the hidden problem of low health literacy and the impact that this has on our ability to access, understand, engage and participate in our health and social care.

• Explains that low health literacy leads to poor health outcomes and widens health inequality.

• Calls for all of us involved in health and social care to systematically address health literacy as a priority in our efforts to improve health and reduce health inequalities.

• Sets out an ambition for all of us in Scotland to have the confidence, knowledge, understanding and skills we need to live well, with any health condition we have.

• Lays out the actions the Scottish Government and partners are taking to help all of us in health and social care collaborate and help realise this ambition.”

 

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Patient and Family-Centred Care: practical tools to improve patient experience – King’s Fund – 4 June 2014

Posted on June 5, 2014. Filed under: Patient Participation | Tags: , |

Patient and Family-Centred Care: practical tools to improve patient experience – King’s Fund – 4 June 2014

Details

Blog entry

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How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms? The ENSUE study – NHS National Institute for Health Research – April 2014

Posted on May 27, 2014. Filed under: Mental Health Psychi Psychol, Patient Participation | Tags: |

How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms? The ENSUE study – NHS National Institute for Health Research – April 2014

Rose D, Barnes M, Crawford M, Omeni E, MacDonald D, Wilson A. How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms? The ENSUE study. Health Serv Deliv Res 2014;2(10). DOI 10.3310/hsdr02100

Background: This study set out to measure the extent and perceived impact of service user involvement (SUI) in mental health services and to explore different forms of SUI, both collective and individual. The focus was on service users’ (SUs’) interactions with managers and other key decision-makers in the UK NHS and social care. The theoretical frameworks used were organisational theory and new social movement theory.

Objectives: To explore the impact of service user involvement in mental health on shaping policy agendas and delivery specifically in terms of their impact on key decision-makers.

Design: A mixed-methods design was used.

Setting: The study took place in three NHS foundation trusts (FTs): two metropolitan and one rural.

Methods: The methods included surveys, interviews, ethnographies, case studies and focus groups.

Results: In the first phase of the study, which took the form of surveys, it was found that ‘ordinary’ SUs had a relatively high level of involvement in at least one service domain and that where they were involved they believed this had produced a positive impact on service development and delivery. Likewise a majority of front-line staff encouraged SUI and thought this had a positive impact although social workers were more likely to have directly participated in SUI initiatives than nurses. In the second phase of the study, which used qualitative methods, an ethnography of user-led organisations (ULOs) was conducted, which showed that ULOs were being forced to adapt in an organisational climate of change and complexity, and that decision-makers no longer claimed the high moral ground for working with ULOs, but expected them to work within a system of institutional behavioural norms. This posed many challenges for the ULOs. In phase 2 of the research we also examined the role of SU governors in NHS FTs. We posed the question of whether or not SU governors represented a shift away from more collective forms of organisation to a more individual form. It was found that SU governors, too, had to work within a system of norms deriving from the organisational structure and culture of the NHS, and this impacted on how far they were able to exercise influence. There was also evidence that user governors were beginning to organise collectively. In respect of individual forms of involvement we also attempted to run focus groups of people in receipt of personal budgets but concluded that, as yet, they are not embedded in mental health services.

 

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Senior Investigators: Leaders for patient and public involvement in research – National Institute for Health Research (NIHR) – April 2014

Posted on May 22, 2014. Filed under: Patient Participation, Research | Tags: , |

Senior Investigators: Leaders for patient and public involvement in research – National Institute for Health Research (NIHR) – April 2014

How and why Senior Investigators involve patients and the public in their work – National Institute for Health Research (NIHR) Senior Investigators (SIs) – 19 May 2014

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Patient / Family Advisory Councils in Ontario Hospitals – At Work, In Play – The Change Foundation [Toronto, Canada] – 1 April 2014

Posted on April 8, 2014. Filed under: Patient Participation | Tags: |

Patient / Family Advisory Councils in Ontario Hospitals – At Work, In Play – The Change Foundation [Toronto, Canada] – 1 April 2014

““We’re making a culture change here, of trying to engage our patients more in decision making and moving away from advising” (PFAC staff interview).
This report investigates the evolving function and best practices of Ontario’s hospital-based Patient/Family Advisory Councils (PFACs): one mechanism some hospitals are using – among other approaches – to advance patient/family engagement and patient-centred care.

This 3-part preliminary report aims to guide, connect and inspire by presenting thematic findings with examples of challenges and successes (part 1); quantitative data (part 2); and listings of PFAC initiatives, with contacts (part 3). The Foundation interviewed patients, family and staff from 29 hospitals about the functioning and impact of their councils.

Hospitals early in their PFAC journey can learn from those ahead of them. In future, we hope to expand our review beyond hospitals, reporting on PFACs and related bodies in other healthcare sectors.””

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Advancing Effective Communication, Cultural Competence, and Patient-and Family-Centered Care: A Roadmap for Hospitals – The Joint Commission [US] – 3 April 2014

Posted on April 8, 2014. Filed under: Patient Participation | Tags: |

Advancing Effective Communication, Cultural Competence, and Patient-and Family-Centered Care: A Roadmap for Hospitals – The Joint Commission [US] – 3 April 2014

“This monograph was developed by The Joint Commission to inspire hospitals to integrate concepts from the communication, cultural competence, and patient- and family-centered care fields into their organizations. The Roadmap for Hospitals provides recommendations to help hospitals address unique patient needs, meet the patient-centered communication standards, and comply with related Joint Commission requirements. Example practices, information on laws and regulations, and links to supplemental information, model policies, and educational tools are also included. The patient-centered communication standards are presented in Appendix C, which provides self-assessment guidelines and example practices for each standard.”

Note – the copyright date on the downloaded document says 2010 but this posting indicates that it has been updated.

Patient Safety Tool: Advancing Effective Communication, Cultural Competence and Patient- and Family-Centered Care With The Joint Commission
The Joint Commission has updated its monograph, Advancing Effective Communication, Cultural Competence and Patient- and Family-Centered Care With The Joint Commission.

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Health Literacy and Numeracy: Workshop Summary (2014) – National Research Council

Posted on April 4, 2014. Filed under: Patient Participation | Tags: , , |

Health Literacy and Numeracy: Workshop Summary (2014) – National Research Council

National Research Council. Health Literacy and Numeracy: Workshop Summary. Washington, DC: The National Academies Press, 2014.

“Description

Although health literacy is commonly defined as an individual trait, it does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals’ capacities and the health literacy-related demands and complexities of the health care system. Specifically, the ability to understand, evaluate, and use numbers is important to making informed health care choices.

Health Literacy and Numeracy is the summary of a workshop convened by The Institute of Medicine Roundtable on Health Literacy in July 2013 to discuss topics related to numeracy, including the effects of ill health on cognitive capacity, issues with communication of health information to the public, and communicating numeric information for decision making. This report includes a paper commissioned by the Roundtable, “Numeracy and the Affordable Care Act: Opportunities and Challenges,” that discusses research findings about people’s numeracy skill levels; the kinds of numeracy skills that are needed to select a health plan, choose treatments, and understand medication instructions; and how providers should communicate with those with low numeracy skills. The paper was featured in the workshop and served as the basis of discussion.”

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Helping measure person-centred care – The Health Foundation – March 2014

Posted on March 4, 2014. Filed under: Health Mgmt Policy Planning, Patient Participation | Tags: , , |

Helping measure person-centred care – The Health Foundation – March 2014

“Person-centred, individualised, personalised, patient-centred, family-centred, patient-centric and many other terms have been used to signal a change in how health services engage with people. This rapid review summarises research about measuring the extent to which care is person-centred.

Three key questions guided the review:

How is person-centred care being measured in healthcare?
What types of measures are used?
Why and by whom is measurement taking place?

The review signposts to research about commonly used approaches and tools to help measure person-centred care. It aims to showcase the many tools available.

A spreadsheet listing 160 of the most commonly researched measurement tools accompanies the review. This allows users to search according to the type of tool, who it targets and the main contexts it has been tested in. Hyperlinks to the abstracts of examples of research using each tool are also provided.

The review shows that, while a large number of tools are available to measure person-centred care, there is no agreement about which tools are most worthwhile.”

 

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Many to many: How the relational state will transform public services – IPPR – 12 February 2014

Posted on February 18, 2014. Filed under: Health Mgmt Policy Planning, Health Policy, Health Systems Improvement, Patient Participation | Tags: |

Many to many: How the relational state will transform public services – IPPR – 12 February 2014

“This landmark report sets out a new ‘relational state’ agenda for public service reform that would address complex problems holistically, provide more intensive and personalised engagement at the frontline of service delivery, and empower and engage citizens.

We need a radical reconfiguration of our public services to make them better able to tackle the complex challenges – such as antisocial behaviour, chronic ill-health, and long-term unemployment – that are consuming a growing proportion of public expenditure. In the past, public service reform has relied too heavily on bureaucratic and market-based tools that are ill-equipped to deal with these problems.

In this publication, the authors set out how we can build a more relational state in practice, and consider how the lessons offered by some cutting-edge initiatives could help reshape mainstream services. By managing public services as interconnected and decentralised systems, promoting deep relationships and neighbourhood-based approaches in key services, and designing institutions that enable citizens to tackle shared problems together, we can make those services fit for the more complex times that we live in.”

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Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis – NHS Institute for Health Research – November 2013

Posted on December 17, 2013. Filed under: Patient Participation, Public Hlth & Hlth Promotion | Tags: , |

Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis – NHS Institute for Health Research – November 2013

O’Mara-Eves A, Brunton G, McDaid D, Oliver S, Kavanagh J, Jamal F, et al. Community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis. Public Health Res 2013;1(4).

 

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The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide – AHRQ – October 2013

Posted on December 4, 2013. Filed under: Patient Participation | Tags: , |

The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide – AHRQ – October 2013

“An Instrument To Assess the Understandability and Actionability of Print and Audiovisual Patient Education Materials

The Patient Education Materials Assessment Tool (PEMAT) is a systematic method to evaluate and compare the understandability and actionability of patient education materials. It is designed as a guide to help determine whether patients will be able to understand and act on information. Separate tools are available for use with print and audiovisual materials.”

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AHRQ’s New CUSP Module Helps Hospitals Engage Patients and Families in Their Care

Posted on November 6, 2013. Filed under: Patient Participation | Tags: |

AHRQ’s New CUSP Module Helps Hospitals Engage Patients and Families in Their Care

“AHRQ has released a new module for its Comprehensive Unit-based Safety Program (CUSP) to help clinical teams learn how to engage patients and families in their care. Based on a field-tested guide for engaging patients and families, the CUSP Patient and Family Engagement Module includes PowerPoint slides, speaker notes, demonstration videos, and tools to improve communication and patient safety in the hospital setting. The module helps clinicians:

Explore the roles and characteristics of patient and family advisors
Understand the relationship between communication and patient safety
Apply IDEAL Discharge Planning
Communicate adverse events to patients and family members

Clinical teams can use this module to foster an environment where patients, family members, and hospital staff are working together as partners to improve the quality and safety of care.”

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Better Health Together – Canada Health Infoway: New Survey Reveals Canadians Want Access to Digital Health Tools – 23 October 2013

Posted on October 25, 2013. Filed under: Health Informatics, Patient Participation | Tags: |

Better Health Together – Canada Health Infoway: New Survey Reveals Canadians Want Access to Digital Health Tools – 23 October 2013

“Ninety-six per cent of Canadians think it’s important that the health care system make use of digital health tools and capabilities, and 89 per cent feel it is important that they personally have full advantage of digital health tools and capabilities, according to a new survey by Harris/Decima, released by Canada Health Infoway (Infoway).

Other key findings from the Harris/Decima report include:

86 per cent of Canadians agree that digital health will provide health information to a care team in an emergency situation
86 per cent of Canadians believe it is important that their doctors use electronic medical records
90 per cent of Canadians who access their own health information online describe the experience as positive

Every day, more of Canada’s health care system goes digital. It’s a private, secure and effective way to make health care better, for all of us. Today, patients like Alexa Thompson use digital health to help manage their care and wellness.”

… continues on the site

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Organizational Change to Improve Health Literacy: Workshop Summary – Institute of Medicine – 2013

Posted on October 18, 2013. Filed under: Patient Participation | Tags: , , |

Organizational Change to Improve Health Literacy: Workshop Summary – Institute of Medicine – 2013

ISBN 978-0-309-28805-7

“Organizational Change to Improve Health Literacy is the summary of a workshop convened in April 2013 by the Institute of Medicine Board on Population Health and Public Health Practice Roundtable on Health Literacy. As a follow up to the 2012 discussion paper Ten Attributes of a Health Literate Health Care Organization, participants met to examine what is known about implementation of the attributes of a health literate health care organization and to create a network of health literacy implementers who can share information about health literacy innovations and problem solving. This report discusses implementation approaches and shares tools that could be used in implementing specific literacy strategies.

Although health literacy is commonly defined as an individual trait, there is a growing appreciation that health literacy does not depend on the skills of individuals alone. Health literacy is the product of the interaction between individuals’ capacities and the health literacy-related demands and complexities of the health care system. System changes are needed to better align health care demands with the public’s skills and abilities. Organizational Change to Improve Health Literacy focuses on changes that could be made to achieve this goal.”

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Health literacy and health information producers: Report of the findings of a UK wide survey of information producers and providers – The Patient Information Forum (PiF) – 3 October 2013

Posted on October 18, 2013. Filed under: Patient Participation | Tags: , , |

Health literacy and health information producers: Report of the findings of a UK wide survey of information producers and providers – The Patient Information Forum (PiF) – 3 October 2013

Health literacy survey finds support for health information producers is lacking

A Patient Information Forum (PiF) survey has found that although information producers understand why clear, easy to understand and usable health information for the public is important, many are not equipped to meet the challenge. PiF says this lack of support and guidance for producers could derail the government’s ambition for transforming information for the NHS, public health and social care.

Over 340 of the best-known health information producers responded to the survey including voluntary sector organisations, NHS organisations and commercial companies. The survey found that although more than 90 per cent viewed health literacy as very important when producing information for the public, only 10 per cent said they had a health literacy strategy or policy. Fewer than half produced online and printed materials with health literacy in mind.”

… continues on the site

 

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The Impact of Conformance and Experiential Quality on Healthcare Cost and Clinical Performance – Harvard Business School – 27 September 2013

Posted on October 1, 2013. Filed under: Clin Governance / Risk Mgmt / Quality, Health Economics, Patient Participation |

The Impact of Conformance and Experiential Quality on Healthcare Cost and Clinical Performance – Harvard Business School – 27 September 2013

by Claire Senot, Aravind Chandrasekaran, Peter T. Ward, and Anita L. Tucker

“Executive summary.  This study examines the relationship between hospital’s focus on both conformance and experiential dimensions of quality and their impact on financial and clinical outcomes. Conformance quality measures the level of adherence to evidence-based standards of care achieved by the hospitals. Experiential quality, on the other hand, measures the extent to which caregivers consider the specific needs of the patient in care and communication, as perceived by the patient. These are important dimensions to investigate because hospitals may face a tension between improving clinical outcomes and maintaining their financial bottom-line. However, little has been known on the joint impact of these dimensions on hospital performance in terms of cost and clinical quality. The authors’ study, which examined data from multiple sources for the 3,458 U.S. acute care hospitals, is a first step towards understanding these relationships.”

… continues on the site

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Transforming Participation in Health and Care – NHS England – 25 September 2013

Posted on September 26, 2013. Filed under: Patient Participation |

Transforming Participation in Health and Care – NHS England – 25 September 2013

News release: Transforming Participation in Health and Care, Guidance for Commissioners

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Patient Consent for Electronic Health Information Exchange – Office of the National Coordinator for Health Information Technology

Posted on September 19, 2013. Filed under: Health Informatics, Medical Records, Patient Participation | Tags: , , |

Patient Consent for Electronic Health Information Exchange – Office of the National Coordinator for Health Information Technology

“Electronic health information exchange (eHIE) — the way that health care providers share and access health information using their computers — is changing rapidly. One way some providers share and access information is through a third-party organization called a health information exchange organization (HIE).

HIEs help route information among various participating providers. In some HIEs, a provider can send out an electronic broadcast query that asks all provider participants whether they have information on a specific patient.

As eHIE increases, patient trust in HIEs must be ensured and patients may more often be asked to make a “consent decision.” This consent decision concerns the sharing and accessing of the patient’s health information through an HIE for treatment, payment, and health care operations purposes. When patients are asked to make consent decisions, we encourage providers, HIEs, and other health IT implementers to help patients make the consent decision meaningful.

Implementers can enable meaningful consent by ensuring they consider the key parts displayed in the image to the right.”

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Flip the Clinic: New tools and strategies to improve the patient-doctor* encounter *or any care provider*

Posted on September 17, 2013. Filed under: Patient Participation | Tags: , |

Flip the Clinic: New tools and strategies to improve the patient-doctor* encounter *or any care provider*

“Flip the Clinic is a new Robert Wood Johnson Foundation project to re-imagine the medical encounter between patients and care providers.”

“What Exactly Is Flip The Clinic?

Flip the Clinic is an ongoing conversation. As of September 2013, we are in fact-gathering mode, researching the needs and opportunities for improving the doctor-patient interaction and assessing what works and what doesn’t. In the next few months we expect to begin testing some ideas in the real world. And in early 2014, we will launch a toolkit of strategies and resources for both patients and care providers here at FlipTheClinic.org. Our goal is not only to create a specific set of practices that will improve the medical encounter, but also to inspire others to invent new ways to get more out of the doctor’s visit, too.”

 

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Patient Experience 2011/12: Key findings of the New Zealand Health Survey – Ministry of Health – 12 September 2013

Posted on September 13, 2013. Filed under: Patient Participation |

Patient Experience 2011/12: Key findings of the New Zealand Health Survey – Ministry of Health – 12 September 2013

“The patient experience report presents key findings from the continuous New Zealand Health Survey 2011/12 about New Zealanders’ experiences with health care services. The report presents information about patient experience with general practitioners, practice nurses, after-hours doctors, emergency department doctors and medical specialists. Information about continuity of care is also presented.”

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Attributing a monetary value to patients’ time: A contingent valuation approach – Centre for Health Economics, University of York, UK – September 2013

Posted on September 12, 2013. Filed under: Health Economics, Patient Participation | Tags: |

Attributing a monetary value to patients’ time: A contingent valuation approach – Centre for Health Economics, University of York, UK – September 2013

“Abstract

It is hard to ignore the importance of patient time investment in the production of health since the influential paper by Grossman (1972). Patient time includes time to admission, travel time, waiting time, and treatment time and can be substantial. Time to admission is the time between the first referral and the moment that the treatment actually starts. Travel time is the time that a patient needs to travel between the place where the patient lives and the medical care centre where the patient is treated. Waiting time is the time that the patient waits at the medical care centre before treatment. Treatment time is the time spent getting active treatment for example by a doctor or a nurse. Patient time is, however, often ignored in economic analyses. This may lead to biased results and inappropriate policy recommendations, which may eventually influence patients’ health, wellbeing and welfare.

How to value patient time is not straightforward. It is even less straightforward for patients who are not participating in the labour market. Although there is some emerging literature on the monetary valuation of patient time, an important challenge remains to develop an approach that can be used to monetarily value time of patients not participating in the labour market. We aim to contribute to the health economics literature by describing and empirically illustrating how to monetarily value patients’ time comprehensively, using the contingent valuation method. Comprehensively means including various types of patient time (time to admission, travel time, waiting time, and treatment time) as the previous literature focused mainly on valuing a particular type of patient time, for instance waiting time.

This paper describes the development of the contingent valuation survey. The survey is added as an appendix to this paper. This paper also presents the first empirical results of applying our survey approach in a sample of patients in the Netherlands not participating in the labour market. These results show that the monetary value of waiting time was the highest (€30.10/£34.76 per hour) and travel and treatment time were equally valued (respectively €13.20/£11.43 and €13.32/£11.54 per hour).”

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Picker Institute Europe launches free Friends and Family Test resources – 29 August 2013

Posted on September 2, 2013. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Picker Institute Europe launches free Friends and Family Test resources – 29 August 2013

“To coincide with the publication of the second set of national data for the NHS Friends and Family Test (FFT), the Picker Institute have today launched a new set of online resources to support healthcare staff in using FFT results. The resources include accessible, impartial guidance and interactive calculators to help professionals to understand how to use and interpret the data.”

 

 

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Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings – Institute of Medicine – 2013

Posted on August 16, 2013. Filed under: Patient Participation | Tags: , |

Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement: Workshop Proceedings – Institute of Medicine – 2013

“The Institute of Medicine’s Roundtable on Value & Science-Driven Health Care held a workshop, titled Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement, on February 25 and 26, 2013. The workshop, supported by the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, focused on identifying and exploring issues, attitudes, and approaches to increasing patient engagement in and demand for the following: shared decision making and better communication about the evidence in support of testing and treatment options; the best value from the health care they receive; and the use of data generated in the course of their care experience for care improvement.

The workshop hoped to build awareness and demand from patients and families for better care at lower costs and to create a health care system that continuously learns and improves. Participants included members of the medical, clinical research, health care services research, regulatory, health care economics, behavioral economics, health care delivery, payer, and patient communities. Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement Workshop Proceedings offers a summary of the 2-day workshop including the workshop agenda and biographies of speakers.”

 

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Health literacy: the solid facts – WHO Regional Office for Europe – 2013

Posted on August 13, 2013. Filed under: Patient Participation | Tags: , |

Health literacy: the solid facts – WHO Regional Office for Europe – 2013

ISBN: 978 92 890 00154

“ABSTRACT
This publication makes the case for policy action to strengthen health literacy. Evidence, including the results of the European Health Literacy Survey, is presented that supports a wider and relational whole-of-society approach to health literacy that considers both an individual’s level of health literacy and the complexities of the contexts within which people act. The data from the European Health Literacy Survey show that nearly half the Europeans surveyed have inadequate or problematic health literacy. Weak health literacy skills are associated with riskier behaviour, poorer health, less self-management and more hospitalization and costs. Strengthening health literacy has been shown to build individual and community resilience, help address health inequities and improve health and well-being. Practical and effective ways public health and other sectoral authorities and advocates can take action to strengthen health literacy in a variety of settings are identified. Specific evidence is presented for educational settings, workplaces, marketplaces, health systems, new and traditional media and political arenas.”

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Public involvement in decision making relating to potential: Technologies scoping report 16 – Healthcare Improvement Scotland – 17 July 2013

Posted on August 2, 2013. Filed under: Health Economics, Health Technology Assessment, Patient Participation | Tags: |

Public involvement in decision making relating to potential: Technologies scoping report 16 – Healthcare Improvement Scotland – 17 July 2013

“What approaches have been taken and efforts made to ensure public involvement in decision making relating to potential disinvestment in healthcare interventions and technologies?

In response to an enquiry from the Scottish Health Council, Healthcare Improvement Scotland

The following question was scoped:
1. What approaches have been taken and efforts made to ensure public involvement in decision making relating to potential disinvestment in healthcare interventions and technologies?”

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Health literacy: the solid facts – WHO – 2013

Posted on June 28, 2013. Filed under: Patient Participation | Tags: , |

Health literacy: the solid facts – WHO – 2013

“ABSTRACT

This publication makes the case for policy action to strengthen health literacy. Evidence, including the results of the European Health Literacy Survey, is presented that supports a wider and relational whole-of-society approach to health literacy that considers both an individual’s level of health literacy and the complexities of the contexts within which people act. The data from the European Health Literacy Survey show that nearly half the Europeans surveyed have inadequate or problematic health literacy. Weak health literacy skills are associated with riskier behaviour, poorer health, less self-management and more hospitalization and costs. Strengthening health literacy has been shown to build individual and community resilience, help address health inequities and improve health and well-being. Practical and effective ways public health and other sectoral authorities and advocates can take action to strengthen health literacy in a variety of settings are identified. Specific evidence is presented for educational settings, workplaces, marketplaces, health systems, new and traditional media and political arenas.”

ISBN: 978 92 890 00154

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Making the Case for Information: The evidence for investing in high quality health information for patients and the public – Patient Information Forum – 14 June 2013

Posted on June 19, 2013. Filed under: Patient Participation | Tags: |

Making the Case for Information: The evidence for investing in high quality health information for patients and the public – Patient Information Forum – 14 June 2013

“A new Patient Information Forum (PiF) research report highlights how providing information to patients and their carers improves outcomes, reduces costs and gives people a better experience of care.

PiF commissioned research to identify the benefits of investing in health information. The project, which looked at over 300 studies, found that there are good business reasons to justify the investment of more time, money and training in health information provision and support. These include positive impacts on service use and costs, substantial capacity savings, and significant returns on investment by increasing shared decision-making, self-care and the self-management of long-term conditions.”

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Exam Room Computing & Patient-Physician Interactions – American Medical Association Report – 2013

Posted on May 17, 2013. Filed under: Health Informatics, Patient Participation |

Exam Room Computing & Patient-Physician Interactions – American Medical Association Report – 2013

“At the 2012 Annual Meeting, the American Medical Association (AMA) House of Delegates referred to the Board of Trustees Resolution 701-A-12
“Effect of Computers in the Exam Room on Patient-Physician Communication” (Medical Student Section) Resolution 701-A-12 asked:

That our American Medical Association study the effect of electronic devices, including but not limited to computers and tablets, in the exam room on doctor-patient communication with an emphasis on alternatives and modifications that might improve the physician-patient relationship.

Anticipated Benefits & Undesired Consequences”

… continues on the site

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Advocacy: Models and effectiveness – The Institute for Research and Innovation in Social Services (IRISS) – April 2013

Posted on May 1, 2013. Filed under: Patient Participation | Tags: , |

Advocacy: Models and effectiveness – The Institute for Research and Innovation in Social Services (IRISS) – April 2013

“Advocacy has existed in the UK for more than 30 years and throughout this time a range of models and schemes has emerged, appropriate for different groups of people who access support (Action for Advocacy, 2006). Key features of advocacy include: independence from services, empowerment, providing people who access support with a voice, supporting people who access support to achieve active citizenship, challenging inequality, promoting social justice, and supporting people who access support to challenge inequity and unfairness (Boylan and Dalrymple, 2011). Essentially, advocacy can help individuals get the information they need, understand their rights, make their own choices and perhaps, most importantly, voice their opinions. However, it should be noted that advocacy is not about mediation, counselling, befriending, taking complaints or giving advice, although elements of these can be found to varying degrees across the different models (Patient and Client Council, Northern Ireland, 2012).

This Insight draws on evidence in relation to advocacy with both children and adults and on literature from the fields of health and social care. It outlines the key elements of the most prevalent models of advocacy and identifies good practice, as well as the limitations of advocacy models. The Insight will provide an overview of the evidence base of what works in relation to advocacy provision.”

… continues on the site

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Implementing shared decision making – The Health Foundation – April 2013

Posted on April 23, 2013. Filed under: Patient Participation | Tags: , |

Implementing shared decision making – The Health Foundation – April 2013

“The Health Foundation’s MAGIC (Making good decisions in collaboration) improvement programme aims to support clinical teams in primary and secondary care to embed shared decision making with patients in their everyday practice. The programme is developing and testing practical solutions that support patients to make informed and considered decisions about their own care and treatment.

This learning report is based on seven improvement stories developed by the Office for Public Management (OPM) as part of their evaluation of the first phase of the programme. The stories draw on a series of interviews with clinicians and patients carried out by the evaluation team and present the experiences of both primary care and hospital-based teams.

The stories explore the participants’ experiences of the MAGIC programme, and of implementing shared decision making in practice. Each story explains:”

… continues on the site

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Experiences of inpatient services in NHS hospitals – Care Quality Commission – 16 April 2013

Posted on April 17, 2013. Filed under: Patient Participation | Tags: |

Experiences of inpatient services in NHS hospitals – Care Quality Commission – 16 April 2013

“We have published the results of a survey that looked at the experiences of over 64,500 patients who were admitted to an NHS hospital in 2012.

Between September 2012 and January 2013, 850 inpatients at participating NHS trusts were sent a survey asking about the care they received.

We have published the results showing how each trust performed in the survey.

The technique we used to analyse the results allows us to identify whether the trust performed ‘better’, ‘worse’ or ‘about the same’ as other participating trusts.”

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Health statistics notes and guidance: patient experience – NHS England

Posted on April 17, 2013. Filed under: Patient Participation |

Health statistics notes and guidance: patient experience – NHS England

Patient experience overall measure: 2012 inpatient survey update – – 16 April 2013

Patient experience statistics: England

 

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Bring it on – 40 ways to support Patient Leadership – Centre for Patient Leadership – April 2013

Posted on April 12, 2013. Filed under: Patient Participation | Tags: |

Bring it on – 40 ways to support Patient Leadership – Centre for Patient Leadership – April 2013

“Patient Leaders are patients, service users and carers, who work with others at strategic level to influence change in health and healthcare. Patient leadership is more than patient and public engagement and can make a unique contribution to improving services. This Guide – the first of its kind – explains what patient leadership means and the role and purpose of patient leaders. It aims to help NHS organisations foster patient leadership and Patient Leaders. In particular, it is designed so that senior managers, board members and staff in NHS and social care can develop and/or maintain an environment where:

• Patient Leaders are able to engage in effective dialogue with clinical and managerial leaders and others about the health care they provide
• Patient leadership can thrive
• Patient leaders are supported and developed
• People want to become patient leaders

It can also be used by Patient Leaders themselves.”

… continues on the site

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Patient power: what it takes for patient associations to help shape public policy – Stockholm Network Research Team – 2013

Posted on April 9, 2013. Filed under: Health Policy, Patient Participation | Tags: |

Patient power: what it takes for patient associations to help shape public policy – Stockholm Network Research Team – 2013

“This paper seeks to understand the environment in which patient associations emerge and play an active part in healthcare policy making, both theoretically and in practice, in a number of emerging markets.”

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Doctor Know: a knowledge commons in health – Nesta – March 2013

Posted on April 9, 2013. Filed under: Health Informatics, Patient Participation | Tags: , |

Doctor Know: a knowledge commons in health – Nesta – March 2013

Authors: John Loder, Laura Bunt and Jeremy C Wyatt

“The way we create, access and share information is changing rapidly. Every time we look something up on Wikipedia, rate an experience on Tripadvisor or enter search terms in Google, we are taking advantage of the increasingly sophisticated way in which technology and digital tools are allowing us to capture, refine, synthesise and structure our collective intelligence.

With the ongoing advances of the semantic web, new sources of and different applications for data and cultural shifts towards greater openness and transparency, our capacity for creating and navigating complex knowledge grows.

These trends in the creation and application of knowledge have huge implications for how we access, create and apply information in health, a field where knowledge held by patients, doctors, medical researchers, nurses, carers, community providers, families and others is all critical in improving our individual health and well-being. Where information is vast and complex – and the need for accuracy and reliability can be a matter of life and death – our ability to orchestrate knowledge in a useful way is a central concern for any health system.

In partnership with The Young Foundation and the Institute for Digital Healthcare at Warwick University, this paper argues that society’s growing ability to mobilise knowledge from different fields and sources is beginning to show the potential of a ‘knowledge commons’ in healthcare: an open system of knowledge with researchers, practicing clinicians, patients, their families and communities all involved in capturing, refining and utilising a common body of knowledge in real time. We set out what this might mean in practice, and steps we should take to get there.”

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Engaging Patients in Improving Ambulatory Care – Robert Wood Johnson Foundation – 6 March 2013

Posted on April 4, 2013. Filed under: Chronic Disease Mgmt, Patient Participation | Tags: |

Engaging Patients in Improving Ambulatory Care – Robert Wood Johnson Foundation – 6 March 2013

A Compendium of Tools from Maine, Oregon, and Humboldt County, California

“A new toolkit showcases how primary care practices are involving patients in quality improvement efforts as part of Aligning Forces for Quality (AF4Q), the Robert Wood Johnson Foundation’s signature effort to lift the quality of care in targeted communities across the United States. The “Engaging Patients in Improving Ambulatory Care” toolkit features videos and an extensive compendium of adaptable resources from three AF4Q alliances—Maine, Oregon, and Humboldt County, Calif.—to introduce the concept of partnering with patients and families in primary care and share lessons learned.”

… continues on the site

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NHS Constitution for England – 26 March 2013

Posted on April 3, 2013. Filed under: Patient Participation | Tags: |

NHS Constitution for England – 26 March 2013

“The constitution sets out rights for patients, public and staff. It outlines NHS commitments to patients and staff, and the responsibilities that the public, patients and staff owe to one another to ensure that the NHS operates fairly and effectively. All NHS bodies and private and third sector providers supplying NHS services are required by law to take account of this constitution in their decisions and actions.”

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Working with Communities, Developing Communities – Royal College of General Practitioners – 2 April 2013

Posted on April 3, 2013. Filed under: General Practice, Patient Participation | Tags: , |

Working with Communities, Developing Communities – Royal College of General Practitioners – 2 April 2013

“Working with Communities, Developing Communities is the latest resource produced by the RCGP Centre for Commissioning, set up in 2010 to support GPs with the commissioning and delivery of healthcare and services. The publication coincides with the introduction of Clinical Commissioning Groups (CCGs) across England on 1 April.

The guide puts forward both a financial case and health case as to why investing resources in Community Development is beneficial for local populations, primary care practitioners and CCGs.

It emphasises that local populations must be seen as assets, not burdens, in order to make CCGs strong and successful. It also focuses on the need for CCGs to work together and build partnerships within their communities between health, education, housing and other services including policing.

Community Development comes in many forms but all focus on maximising the potential of local individuals and community groups in shaping how public services develop, creating opportunities and solving problems. It uses two main case studies to illustrate these along with numerous other examples, including Time Banks which use participants’ time and skills as currency instead of money.
Community Development professionals will work with residents to identify key, local issues and set agendas important to local people. Local authorities and public service organisations, such as NHS groups, will be involved in making decisions but fundamentally this should be an inclusive process.”

… continues

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Exploring patient participation in reducing health-care-related safety risks – WHO – 2013

Posted on March 20, 2013. Filed under: Patient Participation, Patient Safety | Tags: |

Exploring patient participation in reducing health-care-related safety risks – WHO – 2013

Full text

“Laws and declarations on patients’ rights do not automatically make health care safer, but can help to empower patients. Empowered patients can better manage their own health and health care and participate in efforts to improve safety.

This report presents an overview of the legal influences on patient safety and explores the relationship between patients’ rights, patient participation and patient safety. It provides a synthesis of studies of patient involvement, with detailed examples from Bulgaria, France, the Netherlands, Poland and Portugal. It highlights the need to strengthen a continuum of information between various levels of care, including patient experiences, health literacy and engagement. It offers recommendations on the macro, meso and micro levels of health service delivery. By contributing to the wider process of evidence collation, it will help identify efficient ways to build realistic and informed expectations of health care, while encouraging patients to be vigilant and knowledgeable, thus ensuring maximum safety standards.”

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PatientsLikeMe tool matches patients around the world with clinical trials – Healthcare IT News – 13 March 2013

Posted on March 15, 2013. Filed under: Patient Participation, Research | Tags: , |

PatientsLikeMe tool matches patients around the world with clinical trials – Healthcare IT News – 13 March 2013

“Patient network and real-time research platform PatientsLikeMe announced its clinical trials tool at Europe’s Health Innovation Expo 2013, hosted by the National Health Service (NHS).

The tool pulls from open data to match patients around the world with clinical trials based on their condition and location. The U.S. prototype was launched in 2012.”

… continues

Patients Like Me

About PatientsLikeMe

“PatientsLikeMe was co-founded in 2004 by three MIT engineers: brothers Benjamin and James Heywood and longtime friend Jeff Cole. Five years earlier, their brother and friend Stephen Heywood was diagnosed with ALS (Lou Gehrig’s disease) at the age of 29. The Heywood family soon began searching the world over for ideas that would extend and improve Stephen’s life. Inspired by Stephen’s experiences, the co-founders and team conceptualized and built a health data-sharing platform that we believe can transform the way patients manage their own conditions, change the way industry conducts research and improve patient care.

Today, PatientsLikeMe is a for-profit company, but not one with a “just for profit” mission. We follow four core values: putting patients first, promoting transparency (“no surprises”), fostering openness and creating “wow.” We’re guided by these values as we continually enhance our platform, where patients can share and learn from real-world, outcome-based health data. We’ve also centered our business around these values by aligning patient and industry interests through data-sharing partnerships. We work with trusted nonprofit, research and industry Partners who use this health data to improve products, services and care for patients.”

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Consumer Innovation Challenge: Final Report – Office of the National Coordinator for Health Information Technology – February 2013

Posted on March 11, 2013. Filed under: Health Informatics, Patient Participation | Tags: , |

Consumer Innovation Challenge: Final Report – Office of the National Coordinator for Health Information Technology – February 2013

Prepared for: Office of the National Coordinator for Health Information Technology, U.S. Department of Health and Human Services
Prepared by: RTI International

“The Consumer Innovation Challenge (CIC) project convened representatives from the Health Information Exchange (HIE) cooperative agreement programs in Georgia, Indiana, Montana, and Nebraska to collaborate on ground-breaking approaches to consumer engagement via health IT. Specifically, the challenge asked each state to execute innovative approaches to sharing electronic health information with consumers and enable consumer-mediated exchange through which patients can aggregate, use, and share their own electronic health information.”

… continues

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Keeping your online health and social care records safe and secure [guidance] – BCS – 26 February 2013

Posted on February 28, 2013. Filed under: Health Informatics, Patient Participation |

Keeping your online health and social care records safe and secure [guidance] – BCS – 26 February 2013

“By March 2015 the government has mandated that the NHS provides patients online access to their GP medical records. These records contain potentially sensitive personal information, so it’s important that individuals know how to keep them safe. Everyone should take the same care with their health and social care records as they do if they use online banking.

To help people understand how to keep their records safe including advice on sharing electronic health and care records, creating a strong password and keeping it secure, and developing good habits online to protect your information on your computer or mobile, we have published a new guidance leaflet for the public – ‘Keeping your online health and social care records safe and secure.’

The guidance has been developed by BCS, The Chartered Institute for IT and the Department for Health (DH) as the result of a joint project. We have developed and tested the advice with patients, patient support groups and other interested organisations. It is available free of charge.”

Media release:  New independent patient record guidance for safe keeping of electronic health and care records is published today 

“Advice on sharing electronic health and care records, creating a strong password and keeping it secure, and developing good habits online to protect your information on your computer or mobile device, all appear in new guidance leaflet for the public – ‘Keeping your online health and social care records safe and secure.’ The guidance has been published today by BCS, The Chartered Institute for IT and the Department for Health (DH) as the result of a joint project. It is available free of charge from http://www.nhs.uk/healthrecords and http://www.bcs.org/saferecordkeeping

… continues

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Supporting Consumer and Community Participation in Health and Medical Research: Future Directions for Australia – Consumers Health Forum of Australia – February 2013

Posted on February 28, 2013. Filed under: Patient Participation, Research | Tags: |

Supporting Consumer and Community Participation in Health and Medical Research: Future Directions for Australia – Consumers Health Forum of Australia – February 2013

Extract:

“The purpose of this paper is to explore mechanisms to support consumer participation in health and medical research. This paper also provides a snapshot of the current literature, research and policy debate surrounding these issues. Our analysis draws on extensive work in this area, including consumer consultations and literature scoping undertaken by CHF throughout 2012.

CHF’s research and consultations suggest that more must be done to support active consumer engagement in health research to deliver more relevant and more responsive outcomes. This paper calls for consumer participation to play a key role in any future plans and strategies on health and medical research in the coming years.

CHF also calls for the inclusion of comparative effectiveness research as a central component of future health and medical research planning in Australia, and stronger incentives to encourage the publication of research in non-peer reviewed formats that can be more accessible to policymakers, practitioners and consumers.

To enable more collaborative research practices, CHF considers that the rules for Administering Institutions and Eligible Organisations should be reviewed and amended to support research funding for a broader range of organisations. Other grant funding rules and requirements should also be reviewed to enable greater community engagement in research design, investigation and data collection.

To support all of these activities, and to build on existing models of active consumer engagement, CHF calls for the establishment of a Consumer Health Research Centre.”

.. continues

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Patient-led assessments of the care environment (PLACE) – NHS – 19 February 2013

Posted on February 22, 2013. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation |

Patient-led assessments of the care environment (PLACE) – NHS – 19 February 2013

“Today Jane Cummings, Chief Nursing Officer for England, has written to NHS leaders introducing the new system for assessing the quality of the hospital environment from April 2013.  Patient-led assessments of the care environment (PLACE) is the new system for assessing the quality of the hospital environment, which replaces Patient Environment Action Team (PEAT) inspections from April 2013. PLACE assessments will apply to all hospitals delivering NHS-funded care, including day treatment centres and hospices.

PLACE assessments put patient views at the centre of the assessment process, and use information gleaned directly from patient assessors to report how well a hospital is performing in the areas assessed – privacy and dignity, cleanliness, food and general building maintenance. It focuses entirely on the care environment and does not cover clinical care provision or staff behaviours.

The assessments will be undertaken annually, and results will be reported publicly to help drive improvements in the care environment. The results will show how hospitals are performing nationally.

Most importantly, patients and their representatives will make up at least 50 per cent of the assessment team, which will give them the opportunity to drive developments in the health services they receive locally.”

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NHS Friends and Family Test: guidance on scoring and presenting results published – 14 February 2013 update

Posted on February 19, 2013. Filed under: Patient Participation |

NHS Friends and Family Test: guidance on scoring and presenting results published – 14 February 2013 update

“This guidance details how the National Friends and Family Test results and data will be published to the public and NHS.”

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Engaging Health Care Users: A Framework for Healthy Individuals and Communities – American Hospital Association – 2013

Posted on February 19, 2013. Filed under: Patient Participation | Tags: |

Engaging Health Care Users: A Framework for Healthy Individuals and Communities – American Hospital Association – 2013

Benjamin K. Chu and John G. O’Brien, co-chairs

Extract from the executive summary

“The American Hospital Association (AHA) in its framework for health reform, Health for Life, embraces the need to engage patients and families and contemplates the role of hospitals and health care systems in improving the total health of the population and community they are serving. Within this context, in 2012 the AHA Committee on Research decided to focus on patient and family engagement. This subject has taken on increasing importance with the growing recognition that actively engaging health care users in their care can improve outcomes and reduce health care costs. To adequately embrace the AHA’s mission to improve the health of people and communities, hospitals must become more “activist” in their orientation and move “upstream”—that is, they must do more to engage patients earlier in the disease process.”

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Models for citizen and patient involvement in health care policy Part I: Exploration of their feasibility and acceptability – Belgian Health Care Knowledge Centre – 17 January 2013

Posted on January 29, 2013. Filed under: Patient Participation |

Models for citizen and patient involvement in health care policy Part I: Exploration of their feasibility and acceptability – Belgian Health Care Knowledge Centre – 17 January 2013

“Background and aim

In a public health insurance system, policy decisions on different levels in health care should reflect societal values. On the macro level, this relates to setting global priorities for resource allocation in health care, on the meso level to decisions regarding the reimbursement of products and services for a particular disease and on the micro level to the reimbursement for a particular patient. Today, in Belgium, elected politicians are expected to represent the general public in defining global health care priorities. For the reimbursement of products and services, deliberation amongst multiple stakeholders takes place. Patients and citizens do not participate in this debate. Some participating stakeholders claim to represent patients and citizens, but it remains unclear how, as no structured consultation with this stakeholder group takes place. The aims of the current study are (1) to describe possible models for public and patient involvement in health care decision making at different levels and (2) to assess their acceptability to Belgian stakeholders.”

… continues

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Involving patients in improving safety – The Health Foundation – January 2013

Posted on January 24, 2013. Filed under: Patient Participation, Patient Safety | Tags: |

Involving patients in improving safety – The Health Foundation – January 2013

“Much is being done to improve safety in healthcare. Patients themselves can help to safeguard their own wellbeing and promote change. This evidence scan describes ways that patients have been involved in improving safety.

The scan addresses the questions:
•How have patients and carers been involved in improving safety in healthcare?
•Is there any evidence that patient involvement leads to improved safety?

The main approaches to involving patients in safety improvement that the scan identifies include:
•collecting feedback retrospectively
•asking patients to help plan broad service change
•encouraging patients to help identify risks when they are receiving care.”

… continues on the site

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Reshaping surgical services: principles for change – Royal College of Surgeons – January 2013

Posted on January 21, 2013. Filed under: Patient Participation, Surgery | Tags: |

Reshaping surgical services: principles for change – Royal College of Surgeons – January 2013

King’s Fund blog on this

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Shared Decision Making Programme launches 14 Patient Decision Aids [UK] – 10 January 2013

Posted on January 15, 2013. Filed under: Patient Participation | Tags: |

Shared Decision Making Programme launches 14 Patient Decision Aids [UK] – 10 January 2013

“The aim of the Right Care Shared Decision Making Programme is to embed Shared Decision Making in NHS care. This is part of the wider ambition to promote patient centred care, to increase patient choice, autonomy and involvement in clinical decision making and make “no decision about me, without me” a reality.”

Shared decision making site
“Decision Support is a process for helping individuals to arrive at an evidence based choice regarding their treatment, where there is more than one option for treating their condition.”

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Confronting Costs: Stabilizing U.S. Health Spending While Moving Toward a High Performance Health Care System – Commonwealth Fund – 10 January 2013

Posted on January 10, 2013. Filed under: Clin Governance / Risk Mgmt / Quality, Health Economics, Patient Participation | Tags: |

Confronting Costs: Stabilizing U.S. Health Spending While Moving Toward a High Performance Health Care System – Commonwealth Fund – 10 January 2013 

Media release. Commission of Leading Health Care Experts Offers New Strategy to Slow Spending Growth by $2 Trillion Over 10 Years While Improving Health System Performance – Commonwealth Fund – 10 January 2013

“Changing How Care Is Paid For, Giving Consumers Better Information and Incentives to Choose Wisely, and Improving How Health Care Markets Function Could Result in Substantial Savings for Federal and Local Governments, Employers, and Families”

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Improving Quality and Reducing Costs in Health Care: Engaging Consumers Using Electronic Tools – Bipartisan Policy Center Health Information Technology Initiative – December 2012

Posted on January 10, 2013. Filed under: Health Informatics, Patient Participation | Tags: |

Improving Quality and Reducing Costs in Health Care: Engaging Consumers Using Electronic Tools – Bipartisan Policy  Center Health Information Technology Initiative – December 2012

“Engaging consumers more fully in their own health and health care not only improves the experience of care for patients and their families, it also improves the quality and costeffectiveness of care. Research shows that more engaged patients have better outcomes in terms of both cost and quality, which is why consumer engagement is such an essential element of new delivery system and payment reforms now emerging to address the significant challenges facing the U.S. health care system. Online and electronic tools that play such key roles in many other aspects of American life—from how people manage their finances to how they shop for goods and services—can be leveraged to accelerate and support patient engagement efforts in health care.

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Patient Engagement Framework – National eHealth Collaborative [US] – 19 November 2012

Posted on January 10, 2013. Filed under: Health Economics, Patient Participation | Tags: |

Patient Engagement Framework – National eHealth Collaborative [US] – 19 November 2012

“The Patient Engagement Framework is a model created to guide healthcare organizations in developing and strengthening their patient engagement strategies through the use of eHealth tools and resources.”

Media release

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Liberating the NHS: No decision about me without me. Government response to the consultation: Steps set out for greater patient involvement and more choice – 13 December 2012

Posted on January 4, 2013. Filed under: Patient Participation |

Liberating the NHS: No decision about me without me. Government response to the consultation: Steps set out for greater patient involvement and more choice – 13 December 2012

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Patient and family-centred care programme – King’s Fund and the Health Foundation

Posted on January 4, 2013. Filed under: Patient Participation |

Patient and family-centred care programme – King’s Fund and the Health Foundation

 

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The Disconnect Between the Advance Care Planning Needs of the Healthcare System and the Needs of Patients – GeriPal – 11 December 2012

Posted on January 2, 2013. Filed under: Aged Care / Geriatrics, Palliative Care, Patient Participation |

The Disconnect Between the Advance Care Planning Needs of the Healthcare System and the Needs of Patients – GeriPal – 11 December 2012

Extract:

“In the spirit of patient empowerment, we have created a website called PREPARE that may address some gaps that currently available advance care planning materials do not fill. For instance, PREPARE is designed to empower people, through video demonstration, HOW to identify their values, how to communicate their values, how to asks physicians questions, and how to make informed medical decisions that are aligned with their values and beliefs. PREPARE is designed to be completed outside of the medical environment, is written at a 5th-grade reading level, includes videos that model behavior, helps people engage in a step-by-step process of advance care planning, and will be made available for free.

PREPARE will launch January 4th, 2013.”

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Better together – Patient opinion service evaluation report – Healthcare Improvement Scotland – 21 November 2012

Posted on December 7, 2012. Filed under: Patient Participation | Tags: |

Better together – Patient opinion service evaluation report – Healthcare Improvement Scotland – 21 November 2012

“The Scottish Government, as part of the Better Together Programme funded a pilot of Patient Opinion http://www.patientopinion.org.uk/ from April 2011 to March 2012 with a further contract extension to end of June 2012. The purpose of this pilot was to support and evaluate the use of a feedback tool that captures public experiences in NHSScotland to be used in a positive way to help drive service improvements.

A report which evaluates how effective the Patient Opinion service has been at enabling patients and carers to give feedback on their healthcare experiences, and delivering that feedback to relevant staff from NHSScotland users on their healthcare experience can be downloaded from the link above.”

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An inter-sectoral approach for improving health literacy for Canadians – Public Health Association of BC – November 2012

Posted on November 27, 2012. Filed under: Patient Participation | Tags: |

An inter-sectoral approach for improving health literacy for Canadians – Public Health Association of BC – November 2012

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Patients’ experience of integrated care. A report from the Cancer Campaigning Group [UK] – 20 November 2012

Posted on November 21, 2012. Filed under: Oncology, Patient Participation | Tags: |

Patients’ experience of integrated care. A report from the Cancer Campaigning Group [UK] – 20 November 2012

Media release

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Designing Consumer Health IT: A Guide for Developers and Systems Designers – AHRQ – September 2012

Posted on November 20, 2012. Filed under: Health Informatics, Patient Participation | Tags: |

Designing Consumer Health IT: A Guide for Developers and Systems Designers – AHRQ – September 2012

“The Agency for Healthcare Research and Quality (AHRQ) is working to speed the development of effective consumer health information technology (IT) applications so people can better use their personal health information to manage their health. AHRQ sought to learn about methods and strategies that have been used to design and develop successful consumer IT products in industries other than health care. The research first identified successful products based on market penetration, sales, and customer adoption and enjoyment. Next, the research examined the design methods that were used to develop these successful products through: 1) an environmental scan and grey literature review, 2) in-depth interviews with expert developers, and 3) guidance from a technical expert panel (TEP).”

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Public engagement and knowledge translation: environmental scan – Collaborative Health Innovation Network (CHIN) Alberta – November 2012

Posted on November 20, 2012. Filed under: Knowledge Translation, Patient Participation |

Public engagement and knowledge translation: environmental scan – Collaborative Health Innovation Network (CHIN) Alberta – November 2012

Background

“The Collaborative Health Innovation Network (CHIN) was established in 2009 as a forum through which Alberta organizations can cooperate to improve the link between evidence and decision-making, and to increase the speed and impact of Alberta’s research investment through effective knowledge translation (KT). To explore how CHIN members could best work together, a working group convened to investigate an area of common interest – public engagement.

The investigation was built upon recent key documents and focused specifically on public engagement as it relates to the use of effective knowledge translation strategies in bringing evidence to all impacted decision-makers, regardless of the specific decisions to be made. Up for discussion was whether public engagement (PE) is, in and of itself, a KT strategy, or whether PE is a specific element of KT strategy.

An environmental scan was commissioned to:
(a) determine best frameworks and best practices related to the topic of public engagement
(b) understand the current Alberta landscape regarding knowledge translation in public engagement

… continues on the site

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Working towards People Powered Health – Nesta – November 2012

Posted on November 20, 2012. Filed under: Patient Participation | Tags: |

Working towards People Powered Health – Nesta – November 2012

“People Powered Health is about creating a healthcare system in which clinicians and patients collaborate to enable people to live better with their conditions. We know that ‘co-production’ is challenging for both professionals and for patients.

This resource focuses on the challenges for professionals and, in particular, how workforce culture needs to change to enable co-production to move from the margins to the mainstream. We asked a range of experts – clinical, academic, policy as well as commissioners and service providers – to write down their ideas about the relationship between co-production and workforce culture. We were interested in the extent to which they thought culture is a barrier and what can be done about it. The responses are an interesting snapshot of the perspectives of experienced professionals working in and around co-production and health. Some focus on incentive structures, such as recruitment, training and appraisal systems, while others focus on less tangible changes to professional practice, culture and behaviour.”

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Choosing the place of care: The effect of patient choice on treatment location in England, 2003-2011 – Nuffield Trust – 19 November 2012

Posted on November 20, 2012. Filed under: Patient Participation | Tags: |

Choosing the place of care: The effect of patient choice on treatment location in England, 2003-2011 – Nuffield Trust – 19 November 2012

“This report by the Institute for Fiscal Studies (IFS), commissioned by the Nuffield Trust, examines the effect of patient choice and the independent sector on treatment location in England.”

 

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Health complaint commissions in Australia: Time for a national approach to data collection – Australian Review of Public Affairs Volume 11, Number 1: November 2012, 1–18

Posted on November 13, 2012. Filed under: Patient Participation | Tags: |

Health complaint commissions in Australia: Time for a national approach to data collection – Australian Review of Public Affairs Volume 11, Number 1: November 2012, 1–18

Merrilyn Walton, The University of Sydney
Jennifer Smith-Merry, The University of Sydney
Judith Healy, Australian National University
Fiona McDonald, Queensland University of Technology

ABSTRACT

“Health complaint statistics are important for identifying problems and bringing about improvements to health care provided by health service providers and to the wider health care system. This paper overviews complaints handling by the eight Australian state and territory health complaint entities, based on an analysis of data from their annual reports. The analysis shows considerable variation between jurisdictions in the ways complaint data are defined, collected and recorded. Complaints from the public are an important accountability mechanism and open a window on service quality. The lack of a national approach leads to fragmentation of complaint data and a lost opportunity to use national data to assist policy development and identify the main areas causing consumers to complain. We need a national approach to complaints data collection in order to better respond to patients’ concerns.”

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Improving GP services in England – The King’s Fund – 7 November 2012

Posted on November 8, 2012. Filed under: Clin Governance / Risk Mgmt / Quality, General Practice, Patient Participation | Tags: |

Improving GP services in England – The King’s Fund – 7 November 2012

“Exploring the association between quality of care and the experience of patients

Two key elements of the quality of health care provided by GPs are the Quality and Outcomes Framework (QOF), which rewards GP practices for achievement against a range of indicators of clinical quality, and the GP Patient Survey, which asks patients about their experience of using GP services.

Using data for more than 8,000 general practices in England, this paper examines the association between patients’ perceptions about the non-clinical aspects of care and practice performance on measures of clinical quality.”

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Patient Reported Experience Measure (PREM) for urgent and emergency care – Royal College of Paediatrics and Child Health – October 2012

Posted on October 31, 2012. Filed under: Child Health / Paediatrics, Emergency Medicine, Patient Participation |

Patient Reported Experience Measure (PREM) for urgent and emergency care – Royal College of Paediatrics and Child Health – October 2012

“PREMs for urgent and emergency care is a tool developed by the RCPCH with Picker Institute Europe to measure the experience of paediatric patients 0-16 years in all urgent and emergency care settings including; GP practices, out-of-hours centres, A&E departments and the ambulance service.”

… continues

The Development of a Patient Reported Experience Measure for Paediatrics Patients (0-16 years) in Urgent and Emergency Care: Research Report – October 2012  Final Report

Final Urgent and Emergency Care PREM tools

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Patient-Centred Healthcare Indicators Review – International Alliance of Patients’ Organizations – 3 October 2012

Posted on October 29, 2012. Filed under: Patient Participation | Tags: , |

Patient-Centred Healthcare Indicators Review – International Alliance of Patients’ Organizations – 3 October 2012

Extract:

“Introduction and Aims

This literature review sought to identify and assess current initiatives and indicators which aim to measure the patient-centredness of organizations, countries, activities  and any other relevant stakeholders. It is part of a larger project being carried out by the International Alliance of Patients’ Organizations (IAPO), whose goal is to develop a robust set of indicators in order for healthcare service providers to measure how patient-centred they are. This will not only provide a baseline for patient-centredness among stakeholders, but also increase the potential for improvement in their vision, strategy and outcome.”

… continues

Media release

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From vision to action. Making patient-centred care a reality – Richmond Group of Charities [UK] – 2012

Posted on October 23, 2012. Filed under: Chronic Disease Mgmt, Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: , , , |

From vision to action. Making patient-centred care a reality – Richmond Group of Charities [UK] – 2012

Extract from the foreword:

“When our ten leading health and social care charities published our joint view on how high-quality, patient-centred, cost-effective care could be delivered, we were surprised how aligned our thinking was. We agreed five themes on which the post-reform NHS should be based
and within which productivity gains are possible:
• co-ordinated care
• patients engaged in decisions about their care
• supported self-management
• prevention, early diagnosis and intervention
• emotional, psychological and practical support.

Our shared vision has yet to be delivered. The Health Select Committee recently warned the government that if standards of quality and access are to be maintained, system redesign is needed, rather than salami-slicing existing services or incremental improvement (House of Commons Health Committee 2012). We agree.

As leading charities that both advocate for and support the care of people with health and social care needs, we renew our commitment to working with colleagues locally and nationally, in policy and in service delivery, to build a sustainable model for the NHS and its partners.”

… continues

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How to deliver high-quality, patient-centred, cost-effective care. Consensus solutions from the voluntary sector – Richmond Group of Charities [UK] – 2010

Posted on October 23, 2012. Filed under: Chronic Disease Mgmt, Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: , , , |

How to deliver high-quality, patient-centred, cost-effective care. Consensus solutions from the voluntary sector – Richmond Group of Charities [UK] – 2010

Extract from the introduction:

“This publication is the collective effort of ten of the leading health and social care organisations in the voluntary sector. Each organisation submitted evidence to The King’s Fund, which independently analysed and assessed each submission and worked with the organisations to establish a common position. Together we have identified the five key themes that the health and social care system must embrace to be sustainable and to ensure quality. The themes are:
•co-ordinated care
•patients engaged in decisions about their care
•supported self-management
•prevention, early diagnosis and intervention
•emotional, psychological and practical support”

…  continues

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Shared decision making resource centre – The Health Foundation

Posted on October 19, 2012. Filed under: Patient Participation | Tags: |

Shared decision making resource centre – The Health Foundation

“Shared decision making is a process in which clinicians and patients work together to select tests, treatments, management, or support packages, based on clinical evidence and patients’ informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and systems for recording and implementing patients’ treatment preferences.”

 

 

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Consumer participation in the health system – Victorian Auditor-General’s Report – October 2012

Posted on October 16, 2012. Filed under: Patient Participation | Tags: |

Consumer participation in the health system – Victorian Auditor-General’s Report – October 2012

“Consumers should be meaningfully involved in decision-making about their health care and treatment, and broader health policy, planning and service delivery. There is growing recognition and evidence that consumer participation:
• positively influences an individual’s health outcomes if they are given quality information and are actively involved in decisions
• improves quality and safety by helping to design services that meet consumer needs
• provides feedback to drive service improvement
• enhances accountability by openly and transparently reporting on performance to consumers.

The audit assessed the extent to which the Department of Health (the department) and public health services facilitate meaningful consumer participation, including whether consumers are:
• supported to actively participate in their health care
• actively involved at the health service level
• actively involved at the departmental level.”

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Healthwatch England launched – 1 October 2012

Posted on October 5, 2012. Filed under: Patient Participation |

Healthwatch England launched – 1 October 2012

Healthwatch England, the new national, statutory consumer champion for health and social care in England,is launched today.

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Shared decision making leads to a better patient experience – Guardian – 3 October 2012

Posted on October 4, 2012. Filed under: Patient Participation |

Shared decision making leads to a better patient experience – Guardian – 3 October 2012

NHS Shared Decision Making website

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Smartphone app translates illness symptoms in 22 languages – 21 September 2012

Posted on September 25, 2012. Filed under: Health Informatics, Patient Participation |

Smartphone app translates illness symptoms in 22 languages – 21 September 2012

“Researchers at Gunma University Hospital have worked out a smartphone application for producing a medical interview sheet for presentation to a doctor in up to 22 languages, based on replies to a multilingual questionnaire on the user’s bio-data, symptoms and illness history.

The free app “Health Life Passport” has been developed for those preparing for doctor visits in foreign countries, such as foreign nationals in Japan not confident about expressing symptoms in Japanese as well as Japanese visiting hospitals overseas, they said.

Since the app was released in July, it has been downloaded in more than 40 countries, they said. It can be used in areas with no cellphone signals once downloaded, they added.

The iPhone version is capable of handling 22 languages, while the one for Android phones uses 10 languages, they said.”

… continues on the site

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New System for Patients to Report Medical Mistakes – New York Times – 22 September 2012

Posted on September 25, 2012. Filed under: Health Informatics, Patient Participation |

New System for Patients to Report Medical Mistakes – New York Times – 22 September 2012

“The Obama administration wants consumers to report medical mistakes and unsafe practices by doctors, hospitals, pharmacists and others who provide treatment.

Hospitals say they are receptive to the idea, despite concerns about malpractice liability and possible financial penalties for poor performance.

In a flier drafted for the project, the government asks: “Have you recently experienced a medical mistake? Do you have concerns about the safety of your health care?” And it urges patients to contact a new “consumer reporting system for patient safety.” The government says it will use information submitted by patients to make health care safer.

Federal officials say that medical mistakes often go unreported, and that patients have potentially useful information that could expose reasons for drug mix-ups, surgery on the wrong body part, radiation overdoses and myriad other problems that cause injuries, infections and tens of thousands of deaths each year.

Hospitals and even some doctors say the proposal has merit. “It’s a great concept,” said Nancy E. Foster, a vice president of the American Hospital Association. “The idea is welcome.”  ”

… continues on the site

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Measuring patient experience of integration in the NHS – 30 August 2012

Posted on September 10, 2012. Filed under: Health Mgmt Policy Planning, Patient Participation | Tags: |

Measuring patient experience of integration in the NHS – 30 August 2012

“The NHS Future Forum report on Integration recommended that new patient experience measures should be developed to evaluate patients’ experiences across whole journeys of care.

There is currently no single bespoke measure of patient experience of integration in or across the NHS. Developing measures of integration is difficult due to the very large number of potential patient journeys. But this publication highlights the data sources already available that can help NHS organisations assess experience of integrated care locally.

The Department has identified seven core questions that relate to integration of care that are already asked in existing surveys. NHS organisations can use the answers to these questions to develop a sense of how patients feel about integration between services locally at present.

Interim measures for patient experience at the interfaces between NHS services

Interim integration measures for patient experience spreadsheet provides a summary of the most recent results available for the seven core questions and where to find the existing information.”

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Providing Clinical Summaries to Patients after Each Office Visit: A Technical Guide – July 2012

Posted on September 10, 2012. Filed under: Health Informatics, Patient Participation | Tags: , |

Providing Clinical Summaries to Patients after Each Office Visit: A Technical Guide – July 2012

“Executive Summary

The Centers for Medicare and Medicaid Services (CMS) include the practice of giving a clinical summary to patients after each office visit as an element of Meaningful Use of an electronic health record (EHR) Stage One.

Giving every patient a clinical summary after each office visit is one of the most challenging of all meaningful use elements because of the complexity of both the information flow and the workflows involved.

This document is a guide to help eligible professionals and their organizations gain a better grasp of how to successfully meet the criteria of giving clinical summaries to patients after each office visit. It discusses the two requirements to accomplishing these goals and assists organizations in meeting them.”

… continues

“Clinical Summary—Defined
CMS has defined the clinical summary as “an after-visit summary (AVS) that provides a patient with relevant and actionable information and instructions containing the patient name, provider’s office contact information, date and location of visit, an updated medication list, updated vitals, reason(s) for visit, procedures and other instructions based on clinical discussions that took place during the office visit, any updates to a problem list, immunizations or medications administered during visit, summary of topics covered/considered during visit, time and location of next appointment/testing if scheduled, or a recommended appointment time if not scheduled, list of other appointments and tests that the patient needs to schedule with contact information, recommended patient decision aids, laboratory and other diagnostic test orders, test/laboratory results (if received before 24 hours after visit), and symptoms.”

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Best Care at Lower Cost: The Path to Continuously Learning Health Care in America – Institute of Medicine – 6 September 2012

Posted on September 7, 2012. Filed under: Clin Governance / Risk Mgmt / Quality, Educ for Hlth Professions, Health Informatics, Patient Participation | Tags: |

Best Care at Lower Cost: The Path to Continuously Learning Health Care in America – Institute of Medicine – 6 September 2012

Full text

“… IOM convened the Committee on the Learning Health Care System in America to explore these central challenges to health care today. The product of the committee’s deliberations, Best Care at Lower Cost, identifies three major imperatives for change: the rising complexity of modern health care, unsustainable cost increases, and outcomes below the system’s potential. But it also points out that emerging tools like computing power, connectivity, team-based care, and systems engineering techniques—tools that were previously unavailable—make the envisioned transition possible, and are already being put to successful use in pioneering health care organizations. Applying these new strategies can support the transition to a continuously learning health system, one that aligns science and informatics, patient-clinician partnerships, incentives, and a culture of continuous improvement to produce the best care at lower cost. The report’s recommendations speak to the many stakeholders in the health care system and outline the concerted actions necessary across all sectors to achieve the needed transformation.”

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PALANTE: PAtient Leading and mANaging their healThcare through EHealth – European Commission

Posted on August 30, 2012. Filed under: Health Informatics, Patient Participation | Tags: |

PALANTE: PAtient Leading and mANaging their healThcare through EHealth – European Commission

“Patient empowerment is considered a potential tool to reduce healthcare costs and improve efficiency of the health systems, reinforcing healthcare quality. Patient empowerment has become an element of high priority in the EU health strategy, supported by national and regional health authorities. Building on already existing e-health platforms and services in the participating regions, the PALANTE project focuses on the implementation, scaling up and optimisation of 7 demonstration pilots based on the concept of secure and user friendly online access by citizens to their medical/health data. The main goal of this proposal is to empower patients so they will be able to make informed decisions about their health, take an active role in their care and collaborate effectively with their healthcare team thanks to the use of information and communication technologies. The PALANTE Project considers 7 new pilots in 6 countries (7 regions) and 2 additional on-going pilots in 2 other countries. The pilots have been carefully selected to cover different levels of patient empowerment. Globally, the project mobilizes 21 partners in 10 different countries, and 69.550 new users. Pilot teams include public and private partnerships ensuring all the key stakeholders involved in eHealth provision. All the pilots address the issue of patient’s secure access to their own health information. Additionally, 5 of these pilots deal with integrated chronic disease management support, including comprehensive self-learning, education and monitoring systems that will be validated for diabetes, chronic heart failure, severe arthritis and respiratory diseases. They cover a wide range of services with different grade of complexity and thus different number of patients according to each service. The Project also takes into account the challenge of patients’ mobility by addressing interoperability among pilots. Some partners of PALANTE consortium are directly involved in EpSOS project.”

http://www.palante-project.eu – Note, site not working as at 30 August 2012

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Health Outcomes of Care: An Idea Whose Time Has Come – Canadian Institute for Health Information (CIHI) and Statistics Canada – 16 August 2012

Posted on August 17, 2012. Filed under: Health Status, Patient Participation | Tags: , , |

Health Outcomes of Care: An Idea Whose Time Has Come – Canadian Institute for Health Information (CIHI) and Statistics Canada – 16 August 2012

“Learning about gains in Canadians’ health status—especially from patients themselves—would provide a more comprehensive picture of population health and health care services, according to a report by the Canadian Institute for Health Information (CIHI) and Statistics Canada.

There is currently little clear connection between processes of care and outcomes—important information in determining the value obtained from health care investments. Although there are no standard, comprehensive, repeated measures of health status at the population level in Canada that could be used to assess outcomes of care, the country has seen progress:

In home and continuing care, the Resident Assessment Instrument (RAI) system allows care providers to gauge individuals’ progress.
In rehabilitation, the FIM® instrument helps care providers assess patients’ physical and cognitive status.

Both of these tools feed into CIHI databases, allowing our reports to inform decisions at multiple levels in the health care system.

By providing the patient’s perspective and adding information on quality of life, patient-reported outcome measures (PROMs) would provide further insight to help assess how the health care system is:

… continues on the site

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Customer experience in health care: The moment of truth – pwc – 26 July 2012

Posted on July 31, 2012. Filed under: Patient Participation | Tags: |

Customer experience in health care: The moment of truth – pwc – 26 July 2012

“Health care companies are finding their own moments of truth where they engage in new thinking about their customers. Whether these moments are prompted by inspiration from other industries, competition, health reform, consumer demands or the bottom line, agile companies are changing the way they get to know their customers, moving beyond basic transactions and embracing their patients and members as consumers and customers.”

Media release: Moment of truth for healthcare: why the customer experience matters, according to new PwC Health Research Institute Report

“NEW YORK, July 26, 2012 – A good or bad customer experience can make or break a bank or hotel.  Now it’s a crucial “moment of truth” for healthcare organizations that have to work harder for consumer engagement and loyalty, according to a report released today by the Health Research Institute (HRI) of PwC US.  Management of the customer experience in healthcare is an emerging business requirement as health reform and state exchanges open up a retail market for more than 23 million individual shoppers by 2018.

What makes a positive customer experience in healthcare?  According to HRI, consumer perceptions are built across multiple channels — in person, online, on the phone and increasingly through non-traditional settings such as mobile devices and retail health clinics.  Moreover, the ideal experience increasingly is being defined by non-clinical elements, such as convenience, customer service and staff attitude.

When it comes to interacting with a hospital, doctor’s office or other healthcare provider, consumers are nearly twice as likely as those in the airline, hotel, and banking industries to say that staff friendliness and attitude dictate whether the experience was positive or negative.  One third of consumers said they would be willing to switch their health insurance or healthcare provider if another company offered a more “ideal experience.” ”

… continues on the site

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