Patient Participation

Preliminary Draft Methodology Report: Our Questions, Our Decisions: Standards for Patient-centered Outcomes Research – Patient-Centered Outcomes Research Institute – published for public comment 23 July 2012

Posted on July 24, 2012. Filed under: Patient Participation, Research | Tags: , , |

Preliminary Draft Methodology Report: Our Questions, Our Decisions: Standards for Patient-centered Outcomes Research – Patient-Centered Outcomes Research Institute – published for public comment 23 July 2012

Extract from the executive summary:

“In this first report, the Methodology Committee puts forward 60 standards to guide patient-centered outcomes research (Appendix A). The initial range of topics was chosen to reflect areas in which the Committee believed that there were either substantial deficiencies or inconsistencies in how the methods were applied in practice, or for which there was specialized knowledge in how best to conduct research that had not been effectively disseminated.(1-3)”

… continues on the site

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A simple tool to facilitate shared decisions – The Health Foundation’s MAGIC programme

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

A simple tool to facilitate shared decisions – The Health Foundation’s MAGIC programme

“The Health Foundation’s MAGIC programme has been examining how best to enable and embed shared decision making in the NHS. Here, Dr Marie-Anne Durand, and Professor Glyn Elwyn, from the MAGIC Option Grids Collaborative, explain the value of Option Grids as decision aids and talk us through how to use one.”

MAGIC – making good decisions in collaboration

Examples of Option Grids

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How Can Health Care Organizations Become More Health Literate? – Workshop Summary – Institute of Medicine – 18 July 2012

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

How Can Health Care Organizations Become More Health Literate? – Workshop Summary – Institute of Medicine – 18 July 2012

Full text

“Approximately 80 million adults in the United States have low health literacy – an individual’s ability to obtain, process, and understand basic health information. Low health literacy creates difficulties in communicating with clinicians, poses barriers in managing chronic illness, lessens the likelihood of receiving preventive care, heightens the possibility of experiencing serious medication errors, increased risk of hospitalization, and results in poorer quality of life.

It is important for health care organizations to develop strategies that can improve their health literacy, yet organizations often find it difficult to determine exactly what it means to be health literate. The IOM Roundtable on Health Literacy commissioned a paper that defined a health literate health care organization as “an organization that makes it easier for people to navigate, understand, and use information and services to take care of their health.” In November 2011, the roundtable held a workshop to discuss the growing recognition that health literacy depends not only on individual skills and abilities but also on the demands and complexities of the health care system. This document summarizes the workshop.”

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Patient Information Forum (PiF) has released a guide to Personal Health Records (PHRs) – 13 July 2012

Posted on July 18, 2012. Filed under: Health Informatics, Medical Records, Patient Participation |

Patient Information Forum (PiF) has released a guide to Personal Health Records (PHRs) – 13 July 2012

“The Patient Information Forum (PiF) has released a guide to Personal Health Records (PHRs) which highlights their benefits and sets out the challenges practitioners, managers, and patient organisations will face if they are to meet the government’s target of giving every patient access to their GP records by 2015.

A PHR is a patient-controlled copy of all the health information stored about them by health and social care organisations, to which they can add their own data. Paper examples such as women’s maternity notes and children’s Red Books already exist but the NHS Information Strategy has accelerated the drive towards online access.”

… continues

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Centre for Patient Leadership – new website

Posted on July 18, 2012. Filed under: Patient Participation |

Centre for Patient Leadership – new website

“The Centre for Patient Leadership (CPL) provides learning and support for a new generation of healthcare leaders – Patient Leaders.

Now more than ever, the NHS needs new leaders and innovative solutions. But patients, service users and carers are seen as part of the problem and remain a huge untapped asset. It’s time to shift our thinking.

When patients lead and manage their own health and well-being and when they develop the confidence and skills to lead and influence others, something special takes place! Positive change happens, new solutions arrive and collaborative systems of healthcare emerge.

That is what the Centre for Patient Leadership is all about.

The Centre will:”

… continues on the site

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MindHealthConnect: your pathway to a healthy mind – website launch

Posted on July 6, 2012. Filed under: Mental Health Psychi Psychol, Patient Participation |

MindHealthConnect: your pathway to a healthy mind – website launch

mindhealthconnect is funded by the Australian Government and operated by the NHCCN – National Health Call Centre Network

Ministerial media release – 5 July 2012

“Australia’s first national e-mental health online portal has been launched today by Minister for Mental Health Mark Butler.

The new portal, mindhealthconnect, is designed to provide a trustworthy source of information, support and a gateway to therapy for people seeking help for mental health disorders.:

… continues on the site

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Report on the effect of the NHS Constitution – 4 July 2012

Posted on July 5, 2012. Filed under: Health Mgmt Policy Planning, Patient Participation | Tags: |

Report on the effect of the NHS Constitution – 4 July 2012

“The report seeks to clarify the effect of the NHS Constitution on those who use NHS services and who work in the NHS. It considers whether, and to what extent, the Constitution has made a difference to patients, staff, carers and the public, and examines the degree to which it is succeeding in its aims.”

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Health impact assessment: a useful tool for health and wellbeing boards – NHS Confederation – June 2012

Posted on July 3, 2012. Filed under: Health Mgmt Policy Planning, Patient Participation, Public Hlth & Hlth Promotion | Tags: , |

Health impact assessment: a useful tool for health and wellbeing boards – NHS Confederation – June 2012

“This document provides an overview of the health impact assessment (HIA) process. It was developed by one of the health and wellbeing board learning sets, for improving the health of the population, part of the National Learning Network for health and wellbeing boards. Drawing on the work of NHS South of Tyne and Wear, it outlines the key stages of the process and provides a case study which demonstrates how this process might be used to influence decision-making and service delivery.”

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Advanced outcomes – A discussion paper on how best to measure and capture outcomes for people with advanced cancer – Rare Cancers Foundation – 22 June 2012

Posted on July 3, 2012. Filed under: Oncology, Patient Participation | Tags: |

Advanced outcomes – A discussion paper on how best to measure and capture outcomes for people with advanced cancer – Rare Cancers Foundation – 22 June 2012

“The discussion paper has used an assessment of the NHS Outcomes Framework indicators and feedback from the RCF’s Patients’ Army to work out what matters to patients with advanced cancer and whether outcomes for this group of patients are represented within the health reforms. It also looks at the potential of current and future data sources to provide a mechanism for measuring outcomes in advanced cancer and proposes a series of measures that will improve the quality of information available on outcomes for advanced cancer.Importantly, it also suggests how improvements in these outcomes might be incentivised.”

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Ten Attributes of Health Literate Health Care Organizations – Institute of Medicine – June 2012

Posted on July 3, 2012. Filed under: Patient Participation | Tags: , |

Ten Attributes of Health Literate Health Care Organizations – Institute of Medicine – June 2012

Cindy Brach, Debra Keller, Lyla M. Hernandez, Cynthia Baur, Ruth Parker, Benard Dreyer, Paul Schyve, Andrew J. Lemerise, and Dean Schillinger,  Participants in the activities of the IOM Roundtable on Health Literacy.

“This paper describes 10 attributes of health literate health care organizations, that is, health care organizations that make it easier for people to navigate, understand, and use information and services to take care of their health. Having health literate health care organizations benefits not only the 77 million Americans who have limited health litera-cy, but also the majority of Americans who have difficulty understanding and using cur-rently available health information and health services (ODPHP, 2008).

Although health literacy is commonly defined as an individual trait—the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions (Ratzan and Parker, 2000)—there is a growing appreciation that health literacy does not depend on the skills of individuals alone (IOM, 2003). Health literacy is the product of individuals’ capacities and the health literacy–related demands and complexities of the health care system (Baker, 2006; Rudd 2003). System changes are needed to align health care demands better with the public’s skills and abilities (Parker, 2009; Rudd, 2007).  Health literacy has been identified as a priority area for national action, first by the Department of Health and Human Services as an objective for Healthy People 2010 (HHS, 2000), and again in the 2003 Institute of Medicine report Health Literacy: A Pre-scription to End Confusion (IOM, 2004). The following decade saw the achievement of many milestones that marked health literacy’s ascendency in both the public and private sectors (Parker and Ratzan, 2010), including a National Action Plan to Improve Health Literacy (ODPHP, 2010). Health literacy has now reached a possible tipping point, the place where paying attention to it could quickly become the norm for health care organi-zations (Koh et al., 2012).”

… continues

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Citizen Engagement in Health Casebook – Canadian Institutes of Health Research – 8 June 2012

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

Citizen Engagement in Health Casebook – Canadian Institutes of Health Research – 8 June 2012

Table of contents

Foreword
Introduction
Case 1: The “public voice” informs HIV service planning at Vancouver Coastal Health
Case 2: Engaging Canadians in the development of a mental health strategy for Canada
Case 3: Campobello Island health and well-being needs assessment (2008-2009)
Case 4: Québec health and welfare commissioner’s consultation forum
Case 5: The CommunityView Collaboration
Case 6: Shared challenge, shared solution: Northumberland hills hospital’s collaborative budget strategy
Case 7: Our health. Our perspectives. Our solutions: Establishing a common health vision
Case 8: The use of a holistic wellness framework & knowledge networks in Métis health planning
Case 9: Canadian Blood Services’ stakeholder engagement for organ and tissue donation
Case 10: Human tissue biobanking in B.C
Case 11: Share your story, shape your care — engaging Northwestern Ontario
Case 12: Consulting Ontario citizens to inform the evaluation of health technologies: The citizens’ reference panel on health technologies
Case 13: The Eastern Health patient advisory council for cancer care
Case 14: The Toronto food policy council: Twenty years of citizen leadership for a healthy, equitable, and sustainable food system

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Community health champions: creating new relationships with patients and communities – NHS Confederation – 21 June 2012

Posted on June 25, 2012. Filed under: Community Services, Patient Participation | Tags: |

Community health champions: creating new relationships with patients and communities – NHS Confederation – 21 June 2012

“This factsheet introduces the community health champion approach to engaging communities. Altogether Better has been working to share learning about the community health champion model and increase the voice of patients and communities in shaping health and social care services.

Working in partnership with the NHS Confederation, Altogether Better aims to develop a network of community health champions across England, support localities to replicate the values and principles of the community health champion model, and respond positively to some of the important questions and challenges which need to be addressed by health leaders, decision-makers and commissioners.

Imagine two identical health programmes serving deprived areas. Both are hitting their outcome targets, but one is doing a lot more. Somehow, its service users are not just in better health, they are also happier and more confident. A small but significant number who were unemployed have found jobs, in some cases taking whole families off benefits. These families are eating better and taking more exercise. Their children’s attendance at school is better and their results are improving.

It is obvious which approach is more satisfying for healthcare professionals and more attractive to cash strapped funders. Altogether Better’s evidence-based community health champion approach is delivering this social value.”

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Public involvement in research:impact on ethical aspects of research – INVOLVE – June 2012

Posted on June 25, 2012. Filed under: Patient Participation, Research | Tags: |

Public involvement in research:impact on ethical aspects of research – INVOLVE – June 2012

“This resource provides examples of the impact of public involvement in the ethical design and conduct of research.

Authors:  Kristina Staley, TwoCan Associates; Maryrose Tarpey, INVOLVE Coordinating Centre; Helen Hayes, INVOLVE Coordinating Centre and Sarah Buckland, INVOLVE Coordinating Centre.

Drawing on findings from three reviews (Brett et al. 2010; Staley 2009; Smith et al. 2008) and more recent literature, this supplement illustrates how public involvement throughout a study can help to make research more ethical.”

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‘ll tell you what I want, what I really really want – NHS Confederation – 21 June 2012

Posted on June 22, 2012. Filed under: Patient Participation | Tags: |

‘ll tell you what I want, what I really really want – NHS Confederation – 21 June 2012

“Remember the Spice Girls? They exploded into our lives in 1996 and became an instant global phenomenon with their debut single Wannabe and the iconic line “I’ll tell you what I want, what I really really want”.

More than 15 years later the band members have gone their separate ways but the sentiment of the song lives on. People today have a greater understanding of what they want and never more so than in health and social care. As patients increasingly exercise their right to choose where and how they receive their care, it becomes more important than ever for healthcare organisations to offer them what they want.

But what do patients really want? Of course their clinical care has to be of the highest standard possible and, in the vast majority of cases, in both the NHS and the independent sector, it is. But patients today want more than that. The whole package of today’s healthcare has to be right. Patients are the customers and they want to be treated with dignity and respect, be involved in decisions about their care and looked after in a clean, safe environment.”

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Useful resources for health and wellbeing boards – NHS Confederation – 21 June 2012

Posted on June 22, 2012. Filed under: Patient Participation | Tags: |

Useful resources for health and wellbeing boards – NHS Confederation – 21 June 2012

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Patient-Centered Outcomes Research Institute [US] – website link

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

Patient-Centered Outcomes Research Institute [US] – website link

“The Patient-Centered Outcomes Research Institute (PCORI) is authorized by Congress to conduct research to provide information about the best available evidence to help patients and their health care providers make more informed decisions. PCORI’s research is intended to give patients a better understanding of the prevention, treatment and care options available, and the science that supports those options.”

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Guide to Patient and Family Engagement: Environmental Scan Report – Agency for Healthcare Research and Quality [US] – June 2012

Posted on June 18, 2012. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation, Patient Safety | Tags: |

Guide to Patient and Family Engagement: Environmental Scan Report – Agency for Healthcare Research and Quality [US] – June 2012

“This report was prepared for the Agency for Healthcare Research and Quality (AHRQ) by the American Institutes for Research (AIR) under contract HHSA 290-200-600019. It presents the results of an environmental scan conducted by AIR to serve as an evidence-based foundation for the development of the Guide to Patient and Family Engagement: Enhancing the Quality and Safety of Hospital Care.”

Extract from the executive summary:

“This goal of this project is to promote patient and family engagement in hospital settings by developing, implementing, and evaluating the Guide to Patient and Family Engagement: Enhancing the Quality and Safety of Hospital Care (hereafter referred to as the Guide). The Guide will comprise tools, materials, and/or training for patients, family members, health professionals (e.g., hospital clinicians, staff), hospital leaders, and those who will implement the materials in the Guide. Our preliminary vision of the Guide included four components, each with a series of “tools” (e.g., materials, resources, items for training): (1) Patient and Family Active Involvement Materials; (2) Patient and Family Organizational Partnership Materials; (3) Health Professional Materials; and (4) Leadership and Implementation Materials. The tools in the Guide are intended to:

Support the involvement of patients and family members in the safety and quality of their care.
Encourage the involvement of patients and family members in improving quality and safety within the hospital setting.
Facilitate the creation of partnerships between health professionals and patients/family members.
Outline the steps needed to implement changes.”

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Patients’ preferences matter: Stop the silent misdiagnosis – King’s Fund – 29 May 2012

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

Patients’ preferences matter: Stop the silent misdiagnosis – King’s Fund – 29 May 2012

Al Mulley, Chris Trimble, Glyn Elwyn

“Summary

Many doctors aspire to excellence in diagnosing disease. Far fewer, unfortunately, aspire to the same standards of excellence in diagnosing patients’ preferences for their care. Because doctors are rarely made aware of an erroneous preference diagnosis, it could be called ‘the silent misdiagnosis’. Misdiagnosing patients’ preferences may be less obvious than misdiagnosing disease, but the consequences for the patient can be just as severe.

Patients’ preferences matter: stop the silent misdiagnosis outlines the scale of the problem, showing that:

when they are well informed, patients make different choices about treatment
what patients want often differs from what doctors think they want
there are significant variations in care across geographic regions.

Written by Al Mulley, The King’s Fund’s first international visiting fellow, and colleagues in The Dartmouth Center for Health Care Delivery Science, this paper challenges the NHS to stop the silent misdiagnosis and argues that by doing so it will improve not only the service offered to patients but also the performance of the health system as a whole. The central recommendation is that the NHS must measure and report the incidence of preference misdiagnoses. Also, both doctors and patients will need better tools and information.

Addressing the problem of the silent misdiagnosis will require a co-ordinated effort at all levels of the NHS, including patients, clinicians, commissioners and policy-makers. This paper offers suggestions for how that might be achieved; its findings are timely and relevant to all who have the best interests of the patient at heart.”

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Euro Health Consumer Index 2012 Report – Health Consumer Powerhouse – 15 May 2012

Posted on May 30, 2012. Filed under: Patient Participation | Tags: |

Euro Health Consumer Index 2012 Report – Health Consumer Powerhouse – 15 May 2012

by Arne Björnberg
ISBN 978-91-977879-9-4

“A different European healthcare landscape forms before our eyes. This 6th edition of the Euro Health Consumer Index is offering a user-focused, performance-related comparison of 34 national healthcare systems. It has become an “industry standard” of modern healthcare.”

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Alive and clicking: information that benefits all – NHS Confederation – 17 May 2012

Posted on May 21, 2012. Filed under: Health Informatics, Patient Participation | Tags: |

Alive and clicking: information that benefits all  – NHS Confederation – 17 May 2012

“This paper explores the potential for using and sharing information in the NHS. It looks at the costs and benefits of informing and communicating with patients through web and social media platforms versus the costs of not doing so effectively.

Managing information is an essential part of delivering good healthcare but historically difficult to get right. While the NHS drowns in information and spends more and more to gather it, it has struggled to use it to good effect for patients, often shying away from being transparent about how services are run and responding openly when things go wrong.

The third in our series of papers looking at interactions between the NHS, individuals and communities.”

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Summary of the Evidence on Performance of the Patient Activation Measure (PAM) – NHS Kidney Care – May 2012

Posted on May 18, 2012. Filed under: Chronic Disease Mgmt, Patient Participation | Tags: , |

Summary of the Evidence on Performance of the Patient Activation Measure (PAM) – NHS Kidney Care – May 2012

Extract from the Background:

“What is Patient Activation?

Patient Activation refers to people’s ability and willingness to take on the role of managing their health and health care. The concept of activation focuses on skills and knowledge required for day-to-day management of one’s own health. Positive changes in patient activation can lead to positive self-management behaviour changes in patients with chronic conditions.

Patient activation interventions have been developed for patients with cancer, diabetes, hypertension, obstetrical and gynaecological issues, and end-stage renal disease. Such interventions work to increase patient involvement in personal healthcare through education and skill-building, often targeted toward patients initiating specific conversations with their clinicians, thereby promoting a bidirectional interaction between clinicians and patients.”

… continues

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Involving people who use services and their carers in the work of the GSCC 2001-2012 – General Social Care Council [UK] – 16 May 2012

Posted on May 17, 2012. Filed under: Patient Participation, Social Work |

Involving people who use services and their carers in the work of the GSCC 2001-2012 – General Social Care Council [UK] – 16 May 2012

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Smart guides to engagement – NHS Networks – April / May 2012

Posted on May 17, 2012. Filed under: Patient Participation | Tags: |

Smart guides to engagement – NHS Networks – April / May 2012

“The Smart Guides to Engagement series is for everyone working in or with clinical commissioning groups (CCGs). The guides have been written by experts to provide straightforward advice on all aspects of patient and public engagement in an easily digested format.”

Community development – improving population health   Mon 14 May 2012
Listening, learning and responding   Mon 14 May 2012
Practices and patient engagement   Mon 14 May 2012
Engagement for commissioning success    Mon 23 Apr 2012
Working with LINks and local HealthWatch   Wed 18 Apr 2012
Working with lay members and patient representatives   Wed 18 Apr 2012
Get smart about engagement

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Citizen Participation in Health Impact Assessment: Overview of Issues – National Collaborating Centre for Healthy Public Policy [Canada] – May 2012

Posted on May 8, 2012. Filed under: Patient Participation, Public Hlth & Hlth Promotion | Tags: , |

Citizen Participation in Health Impact Assessment: Overview of Issues – National Collaborating Centre for Healthy Public Policy [Canada] – May 2012

“This document examines the main arguments in favour of citizen participation as well as some of the obstacles and risks associated with citizen participation in HIA.

Health Impact Assessment (HIA) is a practice that aims to evaluate the potential impacts of a policy, program or project on population health so as to minimize the negative and maximize the positive effects.

The founding documents of HIA identify citizen participation as one of the cornerstones of HIA. In fact, some maintain that an HIA remains incomplete without the effective and concrete participation of the community (Dannenberg, Bhatia et al., 2006, p.266).

The aim of this report is to introduce public health actors to the issues surrounding citizen participation in HIA. We will first examine the principal arguments in favour of citizen participation. We will then put these arguments into perspective, by also addressing some of the obstacles and risks associated with citizen participation in HIA.”

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Fulfilling the potential – A better journey for patients and a better deal for the NHS – NHS Improvement – April 2012

Posted on May 4, 2012. Filed under: Patient Participation, Surgery | Tags: |

Fulfilling the potential – A better journey for patients and a better deal for the NHS – NHS Improvement – April 2012

Enhanced Recovery Partnership

What is Enhanced Recovery?

“Enhanced Recovery is a novel approach to elective surgery based on the following principles:

patients are in the optimal condition for treatment
patients have different care during their operation
patients experience optimal post-operative rehabilitation.

Enhanced Recovery may be referred to as Rapid, Accelerated Recovery or Fast Track surgery and was originally pioneered in Denmark.

Enhanced Recovery involves the whole health community.

Enhanced Recovery has a compelling clinical evidence base and should be the norm for best practice elective care pathways.”

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Turning what we know into action: A commentary on the National Symposium on Patient Engagement – Health Council of Canada – February 2012

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

Turning what we know into action: A commentary on the National Symposium on Patient Engagement – Health Council of Canada – February 2012

“Turning what we know into action: A report on the National Symposium on Patient Engagement, is based on key learnings from our National Symposium on Patient Engagement in October 2011. The commentary calls for the inclusion of the patient voice when designing, planning and delivering health care services in Canada.”

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Inpatient survey 2011 – Care Quality Commission, NHS – 24 April 2012

Posted on April 26, 2012. Filed under: Patient Participation | Tags: , |

Inpatient survey 2011 – Care Quality Commission, NHS – 24 April 2012

“Read our findings from the Inpatient survey 2011, which looked at the experiences of over 70,000 people who were admitted to NHS hospitals around England.

The results of the survey will be used by NHS Trusts to improve their performance and to understand their patients’ experiences, and we will use the results to support our regulatory, compliance and monitoring activities.

View the A-Z list of inpatient survey results by NHS Trust to find out how your care service performed.”

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Patients Know Best in US trial – eHealth Insider – 25 April 2012

Posted on April 26, 2012. Filed under: Health Informatics, Patient Participation |

Patients Know Best in US trial – eHealth Insider – 25 April 2012

by Rebecca Todd

“A patient records access portal developed by a UK doctor is being used in a United States trial looking at whether giving patients access to their records saves on healthcare costs.

Dr Mohammad Al-Ubaydli, founder and chief executive of the patient-controlled records system Patients Know Best, spoke at the BCS Primary Health Info 2012 conference on Tuesday.

He said the patient record portal has been selected for a trial involving teaching hospitals in the US that has been set up to investigate how giving patients access to their own records can impact their use of healthcare.”

… continues on the site

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Smart Guides to Engagement series – NHS Networks – 18 April 2012

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

Smart Guides to Engagement series – NHS Networks – 18 April 2012

“The first four in a series of 10 Smart Guides to Engagement cover the social and economic benefits, dealing with LINks and local HealthWatch, and the role of lay members and patient representatives on CCG boards. The guides have been co-produced by PPE experts from several organisations with support from the Department of Health. Domain 2 of the CCG authorisation process requires evidence of “meaningful engagement with patients, carers and communities”. The guides are available to download from NHS Networks where CCGs are also invited to leave feedback.”

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Health and wellbeing boards. System leaders or talking shops? – King’s Fund – 12 April 2012

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

Health and wellbeing boards. System leaders or talking shops? – King’s Fund – 12 April 2012

by Richard Humphries, Amy Galea, Lara Sonola, Claire Mundle

“Summary

The reforms to the health and social care system set out in the recent Health and Social Care Act have emphasised the need for integration. Central to these reforms is the establishment of statutory health and wellbeing boards to encourage local authorities to take a more strategic approach to providing integrated health and local government services. Past efforts to achieve the vision of joined-up, well-co-ordinated and jointly planned services have had only limited success. Faced with complex organisational change, unprecedented financial pressures and rising demand for services, will health and wellbeing  boards be able to fulfil these expectations and achieve greater success than previous bodies?

The King’s Fund is well-placed to try to answer that question. We have supported several local authorities and their health partners to develop shadow boards, held a summit to discuss the issues with a range of professionals, and conducted a survey of 50 areas to find out how the new boards are being implemented. Health and wellbeing boards: System leaders or talking shops?  presents the findings from that survey and includes case studies based on the experience of two early implementers.”

… continues on the site

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Consumer Engagement in the Aged Care Reform Process. Report fro the Department of Health and Ageing – Alzheimer’s Australia – December 2011 released 9 April 2012

Posted on April 10, 2012. Filed under: Aged Care / Geriatrics, Patient Participation | Tags: , |

Consumer Engagement in the Aged Care Reform Process. Report fro the Department of Health and Ageing – Alzheimer’s Australia – December 2011 released 9 April 2012

“Too many failures in dementia care.

Alzheimer’s Australia has welcomed the release today by the Minister for Mental Health and Ageing, The Hon Mark Butler, of the Alzheimer’s Australia report, Consumer Engagement in the Aged Care Reform Process.

Alzheimer’s Australia thanked the Minister for taking part in a number of the sixteen consultations that were held around the country and the opportunity provided by these consultations to empower people with dementia and family carers to tell their stories.”

… continues

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NHS Patient Feedback Challenge – March 2012

Posted on April 2, 2012. Filed under: Patient Participation | Tags: |

NHS Patient Feedback Challenge – March 2012

“The NHS Patient Feedback Challenge will provide an opportunity to radically transform patient experience, to spread this learning widely across healthcare systems, and reward those who are making this happen.

The NHS Patient Feedback Challenge is backed by a £1m challenge fund which will support the development of ambitious demonstration sites that::

Develop a fully integrated patient experience measurement system that leads to continuous improvement cycles
Create wholly patient focussed organisations
Encourage spread and adoption of positive patient experience practice within and across organisations
Develop sustainable approaches that live beyond the initial programme”

… continues on the site

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Putting people first through shared decision-making and collective involvement – NHS Confederation – 20 March 2012

Posted on March 28, 2012. Filed under: Patient Participation | Tags: |

Putting people first through shared decision-making and collective involvement – NHS Confederation – 20 March 2012

“Everyone who provides or receives healthcare services needs to play a role in greater decision-making.

This paper, the second in our Uneasy consensus series ahead of the NHS Confederation annual conference and exhibition 2012, explores what it really means to put people first when commissioning and providing services, and sets out what we know about the benefits.”

An uneasy consensus: patients, citizens and the NHS

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Excellence in Hospital Website Transparency Best Practices Awards and Acknowledgement Program – URAC and the Leapfrog Group – 27 March 2012

Posted on March 28, 2012. Filed under: Patient Participation, Patient Safety | Tags: , |

Excellence in Hospital Website Transparency Best Practices Awards and Acknowledgement Program – URAC and the Leapfrog Group – 27 March 2012

“Washington, DC – URAC and the Leapfrog Group have partnered to develop the Excellence in Hospital Website Transparency Best Practices Awards and Acknowledgement Program to identify outstanding hospital websites that promote transparency of quality measures in a manner that is useful and user-friendly for consumers.  All hospitals who publically report their Leapfrog Hospital Survey results are eligible.

The awards program consists of two parts. Part I is an analysis of the overall website transparency and is determined based on a set of objective criteria established in accordance with the National Quality Forum’s guidelines for consumer-focused, Internet-based public reporting of health performance data as well as the Model Public Report Elements prepared for the Agency for Healthcare Research and Quality (AHRQ) and other research-based criteria. The criteria have been developed for the categories of design, credibility, literacy, and connectivity.  Part II evaluates applicants in terms of best practices in website transparency and reporting, and is determined by a panel of expert judges.”

… continues on the site

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Beyond consultation: a guide for health commissioners. How staff and service users can work together to improve health services – Panos London and Naz Project London – March 2012

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

Beyond consultation: a guide for health commissioners. How staff and service users can work together to improve health services – Panos London and Naz Project London – March 2012

“This guide is one output from an engagement process designed and piloted by Panos London and Naz Project London. The project, Beyond Consultation, brought together African women, African men who have sex with men and staff from sexual health and HIV services in South East London. The three-year project aimed to improve the uptake of sexual health and HIV services by African migrants living in South London by enabling them to consider, discuss and address their concerns and priorities with staff from NHS services.”

… continues

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Opening up healthcare innovation. Innovation solutions for a 21st century healthcare system – AIM Research [UK] – 2012

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

Opening up healthcare innovation. Innovation solutions for a 21st century healthcare system – AIM Research [UK] – 2012

ISBN 978-1-906087-45-6

Executive summary

“Healthcare systems in the early 21st century face a crisis. Rising demand and expectations are increasingly out of step with the funding models available.Without radical innovation it seems unlikely that we can sustain the kind of healthcare which we associate with highly developed societies.

The healthcare sector has always been characterised by innovation – in treatments and drugs, in hospital and care systems, in primary and acute care pathways and in chronic disease management. But arguably the system suffers from the problem facing all kinds of organisations – a recognition that, despite huge commitment and investment in generating innovation, ‘not all the smart guys work for us’. The ideas behind ‘open collective innovation’ essentially involve finding ways to spread the knowledge net much more widely, bringing into the innovation process a wider range of players and mobilising their experience and creativity in the search for novel and sustainable solutions.

One key direction in which healthcare innovation can open up lies in harnessing the innovation potential of patients and their carers.We already know of many examples where patients have been a key source of innovation; in today’s environment the challenge is to find ways of scaling this to help deal with the innovation crisis. One powerful route is opened up via interactive web-based platforms which build and mobilise communities with common interests. This report discusses the potential of Web 2.0 interactive platforms and provides examples of several which appear to offer considerable additional traction in developing innovative solutions to the healthcare issues faced by such patients.”

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Transforming patient experience: the essential guide – NHS Institute for Innovation and Improvement – 2012

Posted on March 22, 2012. Filed under: Patient Participation | Tags: |

Transforming patient experience: the essential guide – NHS Institute for Innovation and Improvement – 2012

“This resource is for people with designated responsibility for improving patient experience – both as providers of services and as commissioners. It is intended to provide you with the evidence you need to influence others – both at board level and team level, to focus on improving patient experience.

The content that follows provides a rich source of research evidence, stories from patients and staff and many examples of innovative ideas. It also illustrates a range of well-tested techniques to help you work more closely with patients to understand their experience and use it to improve services.”

… continues

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Patient-Centred Healthcare Indicators Review. For consultation – International Alliance of Patients’ Organizations – March 2012

Posted on March 22, 2012. Filed under: Patient Participation | Tags: |

Patient-Centred Healthcare Indicators Review. For consultation – International Alliance of Patients’ Organizations – March 2012

“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

IAPO press release
IAPO calls for further research into the development of patient-centred healthcare indicators worldwide at their 5th Global Patients Congress

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Patient Opinion – ‘Trip Advisor’ for health and aged care? – 13 March 2012

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

‘Trip Advisor’ for health and aged care? – 13 March 2012

“A new online patient feedback platform for the healthcare system in Australia, based on a successful UK model, was launched last week and aged care services are in its future sights.

The new website, Patient Opinion, is the offspring of the UK website of the same name which has been operating in Great Britain for six years.

A not for profit social enterprise, Patient Opinion aims to be a catalyst and a conduit for improving healthcare services by linking moderated feedback – positive and negative – from healthcare consumers to specific healthcare organisations and encouraging healthcare organisations in turn to respond. ”

… continues

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NHS Patient Experience Framework – 21 February 2012

Posted on March 14, 2012. Filed under: Patient Participation |

NHS Patient Experience Framework – 21 February 2012

“This framework is significant for healthcare organisations because it provides a common evidence-based list of what matters to patients, and can be used to direct efforts to improve services. For example it can be used to help define what questions to ask patients in surveys and in real time feedback.”

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Personal experiences, public value: changing relationships in the NHS – NHS Confederation – 20 February 2012

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

Personal experiences, public value: changing relationships in the NHS  – NHS Confederation – 20 February 2012

“The relationship between individual patients and the health service has been remarkably consistent since the establishment of the NHS in 1948. However, during this time, expectations, technology, patterns of disease and demography have all changed significantly. There remains great attachment to the idea of the NHS as a public service, but public expectations of the service and assumed safety and willingness to bear an ever increasing tax burden are now very different. This paper explores aspects of these changes and what this may mean for the future leadership and sustainability of the NHS.

Intended to stimulate discussion, this paper is the first in a series looking at interactions between the NHS, individuals and communities. A further four papers in the run up to the 2012 NHS Confederation annual conference and exhibition will explore:

putting people first through shared decision-making
information and the power paradigm
micro-enterprises and building community assets
building social value within the system and society.”

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Promoting Your Public Report: A Hands-on Guide – Agency for Healthcare Research and Quality [US] – February 2012

Posted on March 6, 2012. Filed under: Health Mgmt Policy Planning, Patient Participation | Tags: , |

Promoting Your Public Report: A Hands-on Guide – Agency for Healthcare Research and Quality [US] – February 2012

“This toolkit is designed to help communities increase awareness and use of their public reports by consumers and other important audiences. The suggested approaches and template materials are intended for use with the media, both in traditional settings (e.g., printed newspapers, radio broadcasts) and online avenues (e.g., news Web sites, blogs). The materials have been compiled for modification and use by Chartered Value Exchanges and others who produce public reports comparing health care quality, cost, patient experience, and other aspects of value.

Purpose

The suggested approaches and template materials in this toolkit are intended for use with the media, both in traditional settings (printed newspapers, broadcasts on radio and television) and online avenues (news Web sites, bloggers and podcasters, social media). The materials have been compiled for modification and use by Chartered Value Exchanges and others who produce public reports comparing health care quality, cost, patient experience, and other aspects of value. The intent is to help communities increase awareness and use of their public reports by consumers and other important audiences in each local community.”

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Patient experience in adult NHS services quality standard – NICE – 29 February 2012

Posted on February 29, 2012. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Patient experience in adult NHS services quality standard – NICE – 29 February 2012

“1 Patients are treated with dignity, kindness, compassion, courtesy, respect, understanding and honesty.
2 Patients experience effective interactions with staff who have demonstrated competency in relevant communication skills.
3 Patients are introduced to all healthcare professionals involved in their care, and are made aware of the roles and responsibilities of the members of the healthcare team.
4 Patients have opportunities to discuss their health beliefs, concerns and preferences to inform their individualised care.
5 Patients are supported by healthcare professionals to understand relevant treatment options, including benefits, risks and potential consequences.”

… continues on the site

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Users of Public Reports of Hospital Quality: Who, What, Why, and How? – AHRQ – December 2011

Posted on February 2, 2012. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Users of Public Reports of Hospital Quality: Who, What, Why, and How? – AHRQ – December 2011

“An aggregate analysis of 16 online public reporting Web sites and users’ and experts’ suggestions for improvement
Prepared for: Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services
AHRQ Publication No. 12-0016-EF

Extract from the executive summary

“States, community quality collaboratives, and others are investing millions of dollars in the sponsorship and development of public reports on the quality of hospital care. The hope is that these reports will stimulate quality improvement, increase accountability, and improve consumer choices. Although the major method of distributing these reports is through Web sites, it is not known who visits these public reporting Web sites or how Web site visitors use the data presented. This evidence gap leaves report sponsors with minimal guidance on how to construct and implement a report that will successfully engage consumers and providers.

Two key indicators of success for a public reporting Web site are the number of people who access it and the experiences people have when using it. However, there is little publicly available information on these topics. In order to capture these two indicators, we worked with 16 hospital reporting sites affiliated with the AHRQ Chartered Value Exchange program over a 3-month period starting in February 2011. We used two tools: Web analytics to measure and analyze Web site usage patterns for all visitors to the 16 sites, and an online pop-up survey on each Web site to gather information through direct interaction with a subset of visitors. The resulting data were augmented with expert review of the Web sites.

From the survey responses, we focused on consumers (patients and friends or family members) and health care professional respondents (physicians, nurses, hospital executives, etc.) because they are important target audiences for the public report sponsors and also accounted for most of the survey respondents.

We identified 12 key takeaways.”

… continues on the site

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Can changing clinician–patient interactions improve healthcare quality? – The Health Foundation – December 2011

Posted on December 9, 2011. Filed under: Medicine, Patient Participation | Tags: , |

Can changing clinician–patient interactions improve healthcare quality? – The Health Foundation – December 2011

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Involvement, Shared Decision-Making and Medicines – The Royal Pharmaceutical Society – 30 November 2011

Posted on December 9, 2011. Filed under: Patient Participation, Pharmacy | Tags: |

Involvement, Shared Decision-Making and Medicines – The Royal Pharmaceutical Society – 30 November 2011

by Professor Alan Cribb

“The report focuses on a long neglected but much discussed driver of quality in healthcare: joint decision-making between professionals and patients.

There is an increasing emphasis on more partnership working between clinicians and patients and shared decision-making about treatment choices, rather than merely choices about such things as treatment venue. This is needed for reasons of both effectiveness and ethics.”

 

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Joint Strategic Needs Assessment and joint health and wellbeing strategies explained – [UK] Department of Health – 6 December 2011

Posted on December 7, 2011. Filed under: Patient Participation |

Joint Strategic Needs Assessment and joint health and wellbeing strategies explained – [UK] Department of Health – 6 December 2011

“The purpose of this document is to support emerging health and wellbeing boards as they engage with the refresh of Joint Strategic Needs Assessments and develop their preparatory joint health and wellbeing strategy. It also describes what support the Department of Health will provide, including what resources will be available and when, and how we will build in learning from early implementer health and wellbeing boards in this.”

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Patient Experiences in Australia: Summary of Findings, 2010 -11 – ABS – 25 November 2011

Posted on November 29, 2011. Filed under: Patient Participation | Tags: |

Patient Experiences in Australia: Summary of Findings, 2010 -11  – ABS – 25 November 2011
4839.0

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Patient Choice. The Department of Health’s [UK] response to the Cooperation and Competition Panel’s report on patient choice – 14 November 2011

Posted on November 22, 2011. Filed under: Patient Participation |

Patient Choice. The Department of Health’s [UK] response to the Cooperation and Competition Panel’s report on patient choice – 14 November 2011

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Improving Health Literacy Within a State – Workshop Summary – Institute of Medicine – 14 November 2011

Posted on November 15, 2011. Filed under: Patient Participation | Tags: , |

Improving Health Literacy Within a State – Workshop Summary – Institute of Medicine – 14 November 2011

“Nearly half of all American adults lack health literacy – an individual’s ability to obtain, process, and understand basic health information.

In order to improve knowledge among these 90 million people, the IOM’s Roundtable on Health Literacy, along with the UCLA Anderson School of Management, held a workshop on November 30, 2010, to explore ways in which state-based organizations and individuals can work to improve health literacy. At the workshop, speakers discussed the clinical effects of health literacy improvement efforts, the economic outcomes of health literacy implementation, and the impact that various stakeholders can have on health literacy.

The roundtable brings together leaders from the federal government, foundations, health plans, associations, and private companies to discuss challenges related to health literacy and to identify approaches to promote health literacy in both the public and private sectors. This document summarizes the workshop.”

Full text

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We’ve been Listening, Have you Been Learning – The Patients Association [UK] – 8 November 2011

Posted on November 14, 2011. Filed under: Patient Participation, Patient Safety |

We’ve been Listening, Have you Been Learning – The Patients Association [UK] – 8 November 2011

“The Patients Association today launches its report “We’ve been listening, have you been learning?” which details sixteen accounts of poor hospital care heard by its Helpline in the last year.

The report contains some shocking accounts of care received by patients in hospitals across the country, focusing on four key fundamentals of care-communication, access to pain relief, assistance with toileting and help with eating and drinking.” 

… continues

Full text of the report

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Moving towards a planned and citizen-centered publicly-funded provincial health care system – Recommendations to the New Brunswick Minister of Health from the New Brunswick Health Council – 2 November 2011

Posted on November 4, 2011. Filed under: Health Mgmt Policy Planning, Patient Participation |

Moving towards a planned and citizen-centered publicly-funded provincial health care system – Recommendations to the New Brunswick Minister of Health from the New Brunswick Health Council – 2 November 2011

“Last year, the New Brunswick Health Council (NBHC) travelled the province and heard New Brunswickers express that health and health care is a shared responsibility. They expressed a sense of urgency for all stakeholders to assume their responsibilities. Since The Provincial Health Plan 2008-2012 was implemented the health sector partners have had an outline for confirming their own role. Based on the work of the NBHC on measuring the performance of health care in the province, and based on input from citizens as well as discussions with stakeholders, the three recommendations that follow examine how the partners can begin moving towards a planned and citizen-centered publicly-funded provincial health care system.”

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Long term health conditions 2011: research study – NHS – 27 October 2011

Posted on October 31, 2011. Filed under: Chronic Disease Mgmt, Patient Participation | Tags: |

Long term health conditions 2011: research study – NHS – 27 October 2011

Author: Conducted for the Department of Health by Ipsos MORI
 
“New study on attitudes to self care: results of the third and final wave of a tracking study by Ipsos MORI exploring attitudes towards ‘self-care’ and, the public’s perceptions and behaviour with regard to both their own health and the NHS generally; capturing the attitudes and behaviour of those people with an LTC regarding the self management of their condition and their use of healthcare services.”

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Principles for Integrated Care – National Voices – 25 October 2011

Posted on October 26, 2011. Filed under: Chronic Disease Mgmt, Patient Participation | Tags: , |

Principles for Integrated Care – National Voices – 25 October 2011

“The lack of joined-up care is the biggest frustration for patients, service users and carers. Conversely, achieving integrated care would be the biggest contribution the health and care services could make to improving quality and safety.

Patients, service users and carers want continuity of care, smooth transitions between care settings, and services that are responsive to all their needs together.

The Health and Social Care Bill 2011 will give the key commissioning and regulatory organisations in England duties to secure or promote integrated services. We, as organisations representing the interests of patients, service users and carers, want integrated care to develop quickly and at scale.

A range of different approaches should be developed and tested. There can be no single definition, model or system. However, there is a need for common principles to inform all the approaches – principles which put patients and service users at the heart of care.

We are asking the relevant Secretaries of State, all commissioners, regulators and relevant professional organisations to give explicit support to these principles.

Based on the experiences of service users, and research evidence, we state that integrated care must:”   … continues

News release: 30 Charities call on David Nicholson to endorse New Principles for Integrated Care

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Making the case for public engagement: how to demonstrate the value of consumer input – Involve – October 2011

Posted on October 19, 2011. Filed under: Health Economics, Patient Participation |

Making the case for public engagement: how to demonstrate the value of consumer input – Involve – October 2011

“This Involve and Consumer Focus Toolkit demonstrates how to make the case for engagement using monetary terms.

There is a substantial amount of anecdotal evidence in support of public engagement and some case study evidence showing that the value of engagement, if done well, is more than the upfront costs. But there is little hard data to effectively express the benefits of engagement in cash terms.

It has never been more important to be able to make this business case. The UK has recently experienced the most severe recession since the 1930s and public spending will continue to be cut heavily in the years to come, and engagement professionals will need to articulate the value of their work in economic terms.

This practical Toolkit will help users understand and make the business case for engagement and present it to internal and external audiences. It can be used for all kinds of engagement from small scale ‘one off’ projects to major exercises across an entire town or wider local authority area.

It is aimed at those who manage, design, deliver, plan or commission public engagement projects. It does not require the reader to have detailed knowledge of economics.”

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Operating principles for health and wellbeing boards – NHS Confederation – 18 October 2011

Posted on October 19, 2011. Filed under: Patient Participation | Tags: |

Operating principles for health and wellbeing boards  – NHS Confederation – 18 October 2011

“At an event held in July 2011, a number of national organisations developed a set of operating principles to support the effective establishment of health and wellbeing boards.

These operating principles are designed to be a realistic and practical response to supporting health and wellbeing boards. They are intended to help board members consider how to create really effective partnerships across local government and the NHS.”

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Listening and Learning: the Ombudsman’s review of complaint handling by the NHS in England 2010-11 – 18 October 2011

Posted on October 19, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Listening and Learning: the Ombudsman’s review of complaint handling by the NHS in England 2010-11 – 18 October 2011
Press release 

“NHS is failing to deal appropriately with most basic complaints

‘Patchy and slow’ is how the Health Service Ombudsman, Ann Abraham, describes the progress the NHS is making to improve the way it deals with patients’ complaints. In her latest report on NHS performance she warns that ‘The NHS is still not dealing adequately with the most straightforward matters’ and that too many minor disputes are escalated to her Office before they are resolved.

Published today (18 October 2011), Listening and Learning: the Ombudsman’s review of complaint handling by the NHS in England 2010-11 features previously unpublished information about complaints that the NHS has failed to resolve locally. It reveals which NHS trusts and which regions in England generated the most complaints to the Ombudsman’s Office (the second and final stage in the NHS complaints system) during the year. It also highlights the most common reasons for people to complain, and includes complaints information on every trust across the country.

The Ombudsman’s Office received over 15,000 complaints about the NHS in 2010-11. As the stories in the report illustrate, last year relatively minor disputes about unanswered telephones or mix-ups over appointments ended up with the Ombudsman because of knee-jerk responses by NHS staff, and poor complaint handling.”   … continues

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Patients Charting the Course: Citizen Engagement in the Learning Health System – Workshop Summary – Institute of Medicine – 3 October 2011

Posted on October 4, 2011. Filed under: Patient Participation | Tags: |

Patients Charting the Course: Citizen Engagement in the Learning Health System – Workshop Summary – Institute of Medicine – 3 October 2011

“As past, current, or future patients, the public should be the health care system’s unwavering focus and serve as change agents in its care. Taking this into account, the quality of health care should be judged not only by whether clinical decisions are informed by the best available scientific evidence, but also by whether care is tailored to a patient’s individual needs and perspectives. However, too often it is provider preference and convenience, rather than those of the patient, that drive what care is delivered.

As part of its Learning Health System series of workshops, the Roundtable on Value & Science-Driven Health Care hosted a workshop to assess the prospects for improving health and lowering costs by advancing patient involvement in the elements of a learning health system. This publication of the discussions, Patients Charting the Course: Citizen Engagement and the Learning Health System, underscores the centrality of communication strategies that account for and engage individual perspectives, needs, preferences, understanding, and support necessary to mobilize change.”

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N=1: Why people matter in medicine – Royal College of Physicians – 27 September 2011

Posted on September 28, 2011. Filed under: Patient Participation, Pharmacy | Tags: |

N=1: Why people matter in medicine – Royal College of Physicians – 27 September 2011

“A new report has outlined the need to bridge the gap between patients and the medical industry for a more beneficial, effective system of prescribing.

N=1: Why people matter in medicine has been published by a subgroup of the Royal College of Physicians (RCP) Medicines Forum and highlights the part that patient understanding and belief plays in determining whether or not a medicine is taken as advised, or even taken at all.

The report, based on consultations held over a period of 11 months with representatives of patient groups, specialists and views of the RCP’s patient and carer network, makes particular reference to the need for healthcare professionals to use ‘patient terms’ and real life language. The authors note that ‘conversations need to be derived from what the public wants and needs to know about medicines and their effects – not from what professionals want to tell them.’

The report highlights that there is often uncertainty about what is available to the public in terms of life-changing therapeutic products and what modern medicine is actually able to offer.

A key recommendation of the report is that GPs should be able to refer patients with medication problems to a pharmacist adviser who can also be used as a source of advice for both patients and GPs on medication related issues.

Other practical recommendations in the report focus on more effective engagement, service improvement and improving research for the benefit of the public.”

… continues on the site

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Methodological Considerations in Generating Provider Performance Scores for Use in Public Reporting: A Guide for Community Quality Collaboratives – AHRQ – September 2011

Posted on September 27, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Health Mgmt Policy Planning, Patient Participation | Tags: , , , |

Methodological Considerations in Generating Provider Performance Scores for Use in Public Reporting: A Guide for Community Quality Collaboratives – AHRQ – September 2011

“This [white] paper is intended for use by Chartered Value Exchanges (CVEs), community collaboratives, and other organizations interested in creating public reports on the performance of health care providers in their communities. It addresses the issue of inconsistent reports based on the same data and identifies the key methodological decision points that precede publication of a performance report.”

Friedberg MW, Damberg CL. Methodological Considerations in Generating Provider Performance Scores for Use in Public Reporting: A Guide for Community Quality Collaboratives. AHRQ Publication No. 11-0093, September 2011. Prepared by RAND Corporation under Contract No. HHSA290200810037C. Agency for Healthcare Research and Quality, Rockville, MD.

Contents
Acknowledgments
Foreword
Executive Summary
Introduction
How This Paper Is Organized
Overarching Methodological Issue: Performance Misclassification
Decisions Encountered During Key Task Number 1: Negotiating Consensus on Goals and “Value Judgments” of Performance Reporting
Decisions Encountered During Key Task Number 2: Selecting the Measures That Will Be Used To Evaluate Provider Performance
Decisions Encountered During Key Task Number 3: Identifying Data Sources and Aggregating Performance Data
Decisions Encountered During Key Task Number 4: Checking Data Quality and Completeness
Decisions Encountered During Key Task Number 5: Computing Provider-Level Performance Scores
Decisions Encountered During Key Task Number 6: Creating Performance Reports
Summary of Methodological Decisions Made by a Sample of CVE Stakeholders
Appendix 1: Validity and Systematic Performance Misclassification
Appendix 2: Performance Misclassification Due to Chance
References

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AHRQ Initiative Encourages Better Two-way Communication between Clinicians and Patients – 20 September 2011

Posted on September 21, 2011. Filed under: Patient Participation | Tags: |

AHRQ Initiative Encourages Better Two-way Communication between Clinicians and Patients  – 20 September 2011
Agency for Healthcare Research and Quality [US]

“The U.S. Department of Health and Human Services’ (HHS) Agency for Healthcare Research and Quality (AHRQ) today launched an initiative with the Ad Council to encourage clinicians and patients to engage in effective two-way communication to ensure safer care and better health outcomes. For nearly a decade, AHRQ has encouraged patients to be more involved in their health care, and this new initiative builds on previous public education campaigns AHRQ has conducted under contract with the Ad Council around the theme “Questions are the Answer.”  ”

… continues on the site

 

 

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Guidelines for the ethical management of people with advanced chronic or terminal conditions in the final months of life – NHMRC – 8 September 2011

Posted on September 9, 2011. Filed under: Oncology, Patient Participation | Tags: , |

Guidelines for the ethical management of people with advanced chronic or terminal conditions in the final months of life – NHMRC – 8 September 2011
ISBN: 1864965258

“Many people of all ages are diagnosed with chronic or terminal conditions every year.

If you are an individual in this situation or a health practitioner providing care for someone in this situation, the guidance and framework documents on this page may assist with the difficult ethical deliberations around the care you are receiving or providing.

The framework is intended for health professionals and has been designed to guide deliberations over ethical aspects of providing care at the transition phase of a patient’s journey through an advanced chronic or terminal condition, including cancer.

The guide is intended for patients (of all ages), families and carers and has been designed to facilitate what can be difficult conversations about ethically related issues which arise at this time of transition e.g. preferred type and place of care – hospice, hospital, or home.

Both the framework and the guide identify key ethical principles and values relevant to the last twelve months or so of life for those with an advanced chronic or terminal condition making the transition to palliative care. The documents pose some questions which can be explored at any stage of this transition whether as patients, health professionals, family or carers.

They also provide additional resources via web-links to assist health professionals, patients, carers or family members to access further information and advice for deliberations about the ethical aspects of the palliative care being provided.”

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Canada’s Strategy for Patient-Oriented Research. Improving health outcomes through evidence-informed care – Canadian Institutes of Health Research – August 2011

Posted on September 7, 2011. Filed under: Evidence Based Practice, Patient Participation, Research |

Canada’s Strategy for Patient-Oriented Research. Improving health outcomes through evidence-informed care – Canadian Institutes of Health Research – August 2011

“This document sets out a vision and strategy to improve health outcomes and enhance patient care through the levers of research. The underlying premise of the document is that greater uptake of research-based evidence will improve the health of Canadians while improving the cost-effectiveness of the health care system. “

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RWJF, ONC, national health leaders launch quality effort – [US] Govt Health IT – 1 September 2011

Posted on September 7, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation |

RWJF, ONC, national health leaders launch quality effort – US – 1 September 2011

Mary Mosquera

“The Robert Wood Johnson Foundation has launched an effort to increase awareness about what consumers can do to identify and receive higher quality health care.

The “Care about Your Care” project is a month-long effort starting Sept. 1 to help consumers become more aware about the uneven quality of care that the U.S. health system delivers.

The Office of the National Coordinator for Health IT (ONC) is supporting the campaign as part of its consumer engagement efforts, along with the Agency for Healthcare Research and Quality (AHRQ), both of which are part of the Health and Human Services Department.”

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Improving Consumer Health IT Application Development: Lessons from Other Industries: Background Report – Agency for Healthcare Research and Quality – May 2011 [US]

Posted on August 23, 2011. Filed under: Health Informatics, Patient Participation | Tags: |

Improving Consumer Health IT Application Development: Lessons from Other Industries:  Background Report – Agency for Healthcare Research and Quality – May 2011 [US]
Agarwal R, Anderson C, Crowley K, Kannan PK. Understanding Development Methods From Other Industries to Improve the Design of Consumer Health IT: Background Report. (Prepared by Westat, under Contract No. HHSA290200900023I.) AHRQ Publication No. 11-0065-EF. Rockville, MD: Agency for Healthcare Research and Quality. May 2011.

Extract from the report”

“Background

In Crossing the Quality Chasm, the Institute of Medicine outlines six aims critical to transforming health care delivery. One of those aims is the delivery of patient-centered care, “care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (Institute of Medicine 2001, p. 40). Central to the vision of a patient-centered health care system are information technologies and tools in the form of consumer health information technology (IT) applications that support a range of health management activities such as storing and retrieving health information, sharing health information with health care providers, and tracking health-related behaviors and actions. However, despite the acknowledged value potential of consumer health IT applications in regard to improving health management, growing market offerings of consumer health IT applications, and vocal advocates of the technology, at the present time there is insufficient adoption and diffusion among consumers.

To address the need for accelerating the development and diffusion of consumer health IT applications, The Agency for Healthcare Research and Quality (AHRQ) commissioned this report as a key deliverable for the task order entitled “Understanding Development Methods from Other Industries to Improve the Design of Consumer Health IT.” The task order’s findings will constitute a foundation of recommendations intended to guide the development of consumer health IT applications. This report summarizes and synthesizes findings related to design methods used for the development of successful consumer products in industries other than health care. It offers recommendations for developers of consumer health IT applications and provides directions for future research.”

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Designing Consumer Reporting Systems for Patient Safety Events: Contract Final Report – AHRQ – Juy 2011

Posted on August 23, 2011. Filed under: Patient Participation, Patient Safety | Tags: |

Designing Consumer Reporting Systems for Patient Safety Events: Contract Final Report – AHRQ – Juy 2011

“Based on a series of technical expert panel meetings, consumer focus groups, interviews with key stakeholders, and an environment scan and literature review, this project addressed a series of questions about the ideal characteristics of a consumer reporting system, and how such a system could be realistically implemented. (For a summary, select Project Overview.)

The technical expert panel was able to reach consensus on many aspects of consumer reporting systems. However, the panel suggested that there may be a number of types of organizational structures capable of supporting consumer reporting. The report ends with discussion of what is needed to make consumer reporting successful, and the limitations of the study.”

Agency for Healthcare Research and Quality

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The Patient-Centred Care project: Evaluation report – King’s Fund – 11 August 2011

Posted on August 22, 2011. Filed under: Oncology, Patient Participation | Tags: |

The Patient-Centred Care project: Evaluation report – King’s Fund – 11 August 2011

“The Patient-Centred Care Project, an evidence-based co-design (EBCD) project, that aimed to improve the experience and quality of care for patients receiving treatment for breast cancer and lung cancer at Guy’s and St Thomas’ NHS Foundation Trust and King’s College Hospital NHS Foundation Trust. Supported by King’s College London and The King’s Fund, it was funded by Guy’s & St Thomas’ Charity.

This independent evaluation report, commissioned by the Fund, describes the process and impact of the EBCD project within breast cancer services (the first phase of the project). It presents a summary of the findings, including:

the process of evidence-based co-design
the key successes, outcomes and impact of the project
the lessons learned during the project
the solutions implemented in response to the project’s findings.”

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Experience-based co-design. Working with patients to improve health care – The King’s Fund – August 2011

Posted on August 22, 2011. Filed under: Patient Participation | Tags: |

Experience-based co-design. Working with patients to improve health care – The King’s Fund – August 2011

“This toolkit outlines a powerful and effective way of improving patients’ experience of services, and helps you assess how it can help you meet your aims.”

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VOICES redesign and testing to inform a National End of Life Care survey – NHS – July 2011

Posted on August 10, 2011. Filed under: Palliative Care, Patient Participation | Tags: |

VOICES redesign and testing to inform a National End of Life Care survey – NHS – July 2011

“The End of Life Care Strategy made a commitment to build on the VOICES (Views of Informal Carers – Evaluation of Services) work to support the development of a national survey of the bereaved which would capture invaluable information about the quality of care provided to the deceased. The aim of this report is to adapt and test VOICES as a measure of the quality of end of life care as well as investigating whether recruitment strategy can impact upon response rates in VOICES surveys. It also hopes to provide guidance for the planning and execution of future VOICES surveys.”

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Making shared decision-making a reality. No decision about me, without me – The King’s Fund – 28 July 2011

Posted on August 1, 2011. Filed under: Patient Participation | Tags: , |

Making shared decision-making a reality. No decision about me, without me – The King’s Fund – 28 July 2011
Angela Coulter, Alf Collins

Summary

“The government wants to place patients’ needs, wishes and preferences at the heart of clinical decision-making, a vision articulated by the Secretary of State for Health, Andrew Lansley, in the phrase ‘nothing about me, without me’. But what does this mean in practice?

Making shared decision-making a reality: No decision about me, without me aims to answer that question. It clarifies what is meant by the term shared decision-making and what skills and resources are required to implement it and it also outlines what action is needed to make this vision a reality.

The principle of shared decision-making in the context of a clinical consultation is that it should:”

… continues on the site

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New Ad Campaign Urges Patients To Consider Medical Treatment Options – AHRQ – 30 June 2011

Posted on July 1, 2011. Filed under: Patient Participation | Tags: |

New Ad Campaign Urges Patients To Consider Medical Treatment Options – AHRQ – 30 June 2011

Explore Your Treatment Options,” a new multimedia ad campaign announced today by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ) and the Ad Council, encourages patients to become more informed about their options before choosing a treatment for a health condition or illness.

The goal of this campaign is to increase consumers’ involvement in their care by providing easy access to unbiased information about treatment options and tools to encourage patients to work with their doctors, nurses, pharmacists and other clinicians to make health care decisions. It features television, radio, print, web and outdoor ads that encourage consumers to visit AHRQ’s Effective Health Care Program Web site to find plain-language guides that summarize the scientific evidence on treatments for numerous medical conditions, including diabetes, osteoarthritis, high blood pressure, high cholesterol and more.”  … continues on the site

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Public Priorities for Ontario’s Health System — A report of the Citizens’ Reference Panel on Ontario Health Services – pwc – 2011

Posted on June 24, 2011. Filed under: Patient Participation |

Public Priorities for Ontario’s Health System — A report of the Citizens’ Reference Panel on Ontario Health Services – pwc – 2011

“As calls grow for major reforms to Ontario’s health system, PwC decided to take a new approach by listening to the public. The Citizens’ Reference Panel on Health Services aims to represent the public’s voice. Their report, Public Priorities for Ontario’s Health System — A report of the Citizens’ Reference Panel on Ontario Health Services, offers a platform to share their recommendations to create sustainable health care.

The result of a joint effort with public engagement firm MASS LBP, the panel consists of 28 randomly selected people from 14 of the province’s Local Health Integration Networks. The individuals volunteered three weekends to learn about Ontario’s health care system from a range of experts and practitioners, and ratify health care reforms.

While a comprehensive review of Ontario’s health system requires more than three weekends, the panel’s efforts demonstrate the public’s ability to play a more constructive role in the health care debate. The following represents 54 hours of learning, deliberating and prioritizing ideas to present to government, policy makers and health care providers.”

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The Participation Toolkit – Scottish Health Council

Posted on June 21, 2011. Filed under: Patient Participation |

The Participation Toolkit – Scottish Health Council

“The Participation Toolkit has been compiled to support NHS staff in delivering Patient Focus and Public Involvement. It offers a number of tried and tested tools along with some more recently developed approaches.”

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Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care – Workshop Series Summary – Institute of Medicine – 23 May 2011

Posted on May 25, 2011. Filed under: Health Informatics, Patient Participation | Tags: |

Digital Infrastructure for the Learning Health System: The Foundation for Continuous Improvement in Health and Health Care – Workshop Series Summary – Institute of Medicine – 23 May 2011
Full text online

“Like many other industries, health care increasingly is turning to digital information and the use of electronic resources. The next generation digital health infrastructure could shape health and health care in fundamental ways. Electronic patient records, digital communication between patients and clinicians, accessible web-based health information, and even remote site diagnosis and treatment are examples of rapidly emerging technologies with great potential. With access to timely, comprehensive digital health information, patients and clinicians will be able to make collaborative and informed decisions grounded in a sound and up-to-date evidence base. At the same time, the availability of large repositories of health data will transform the breadth, depth, and pace of clinical research and analysis to inform future decisions. 

As part of its Learning Health System Series, the IOM’s Roundtable on Value & Science-Driven Health Care hosted three workshops, sponsored by the Office of the National Coordinator for Health IT, to explore current efforts and opportunities to accelerate progress in improving health and health care with information technology systems. Participants’ discussions and presentations focused on four important cross-cutting dimensions: promoting technical advances and innovation, generating and using information, engaging patients and the public, and fostering stewardship and governance. This report summarizes workshop discussions on these issues and the context for their engagement.”

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Public engagement exploring care and support funding options – (Dilnot) Commission on the Funding of Care and Support – 18 May 2011

Posted on May 20, 2011. Filed under: Health Economics, Patient Participation | Tags: |

Public engagement exploring care and support funding options – (Dilnot) Commission on the Funding of Care and Support – 18 May 2011
“In order to better understand the views of the general public, and specific groups on the future funding of care and support, the Commission has undertaken further research.

In March the Commission invited TNS-BMRB to carry out a research study looking into the views of the general public and specific groups of people around how care and support should be funded in the future.

Andrew Dilnot, Chair of the Commission, said:

“This research demonstrates exactly why reform of funding for care and support is needed. Too many people are not able to plan for the kind of care and support they would want because of confusion over how the current system works. Certainly, the system we have at the moment isn’t one to be proud of and it won’t be able to cope with future demands”

… continues

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Working with patients and members of the public: Current practice and future plans 2011-2012 – Manchester Biomedical Research Centre – 4 May 2011

Posted on May 20, 2011. Filed under: Patient Participation, Research |

Working with patients and members of the public: Current practice and future plans 2011-2012 – Manchester Biomedical Research Centre – 4 May 2011

“Over the past ten years, the process of empowering patients and the public to take an active part in health-related research has been highlighted as an NHS priority.

In reference to this need, Nowgen has recently compiled a report, called ‘Working with patients and members of the public: Current practice and future plans 2011-2012’. Nowgen, part of the MBRC, is a centre of excellence in public engagement, education and professional training in biomedicine.

The report is based on the findings of a patient involvement and public engagement mapping activity, undertaken within the Manchester Biomedical Research Centre in late 2010, which compiled the views of senior researchers on:

What kinds of involvement and engagement work they and their teams had done
The challenges of involvement and engagement work and what could be done to best support these activitites in the BRC”

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Consumers’ Priorities for Hospital Quality Improvement and Implications for Public Reporting – April 2011

Posted on May 20, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation |

Consumers’ Priorities for Hospital Quality Improvement and Implications for Public Reporting – April 2011

Marjorie Ginsburg and Kathy Glasmire, Center for Healthcare Decisions

“What are consumers’ priorities in terms of hospital quality, and does the public have a role in driving quality improvement efforts?

Since 2007, performance data from California hospitals have been publicly available on a Web site under the direction of a multi-stakeholder collaborative, the California Hospital Assessment and Reporting Taskforce (CHART). To help CHART leaders evaluate the usefulness of its work to consumers, the Center for Healthcare Decisions studied consumer perceptions of four Institute of Medicine quality domains: clinical effectiveness, patient safety, responsiveness to patients, and efficiency. The qualitative research involved a series of discussions with diverse groups of consumers throughout California.

The research described in this report is intended to help hospitals set priorities for corrective action and to provide new insights for those involved in public reporting. Among the prominent findings is that consumers attach little importance to the patient safety domain until they are given examples of how failures in this domain could impact patients. After discussions about patient safety, consumers tended to assign this domain the highest priority.

Conclusions and suggestions for hospitals and reporting organizations include:”
…continues on the site

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The Consumer Platform for Health IT: Advancing Patient and family engagement through technology – Consumer Partnership for eHealth – May 2011

Posted on May 10, 2011. Filed under: Health Informatics, Patient Participation |

The Consumer Platform for Health IT: Advancing Patient and family engagement through technology – Consumer Partnership for eHealth – May 2011

Extract from the executive summary

“Members of the Consumer Partnership for eHealth (CPeH) have been working for more than five years to advance patient-centered, consumer-focused health IT (information technology). We believe our nation is at a pivotal moment for transforming our health care system with the support of better information. This platform outlines a vision for how health IT can help patients, and how consumer groups can work alongside other stakeholders to improve health outcomes.

Consumers are the most significant untapped resource in health care. We are eager to be partners in advancing and using technology — which empowers us in so many areas of our lives — to participate more actively in matters of health. As we move toward new care delivery and payment models, the collection and sharing of information with all stakeholders, and especially consumers, will be paramount. Health IT is a critical enabler of the kind of information sharing that is crucial for continuously improving the health of individuals and populations, as well as the nation. Achieving better care, healthier communities, and more affordability will require the utilization of all our collective resources, and consumers have critical assets to bring to policy making tables and to individual decision-making processes. By involving consumers actively in the policy-making process, they are able to contribute critical information and potential solutions that other stakeholders might never consider. As a result, consumers participating at the policy level become invested in new approaches and will help ensure their success. Full engagement of consumers in leadership and decision-making roles at the policy and governance levels is essential, not just for gaining their trust and buy-in, but also for maximizing the likelihood of meeting patient and consumer needs.”

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NeHC to consumers: Take charge of your health – from Governemnt Health IT – 28 April 2011

Posted on April 29, 2011. Filed under: Health Informatics, Patient Participation | Tags: |

NeHC to consumers: Take charge of your health
April 28, 2011 | Mary Mosquera

“The Consumer Consortium on eHealth has launched from dozens of organizations that serve consumers in a variety of ways to encourage participation by individuals in their health care through the use of health information technology.
The National eHealth Collaborative, a public/private partnership that promotes secure health information exchange, brought together representatives from 65 consumer groups, patient advocates and government agencies to start sharing their most effective practices, communication strategies and tools to encourage consumers to become more involved in their health.

Groups included the National Partnership for Women and Families, AARP and the Medical Group Management Association.

Consumers need to be involved in the innovations and investments of health IT to improve the quality and coordination of health care, according to participants.”

…continues on the Government Health IT site

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Customer insight work on maternity and early years – Department of Health [UK] – 7 April 2011

Posted on April 19, 2011. Filed under: Obstetrics, Patient Participation | Tags: |

Customer insight work on maternity and early years – Department of Health [UK] – 7 April 2011

“The following documents are a synthesis of three pieces of qualitative research undertaken by the Department of Health about the experience of expectant and new parents. The three projects explored how parents feel about the pregnancy and parenthood journeys and their expectations of the health service.

The research summary is available either as a PFD or in Powerpoint for presentation purposes and gives valuable insights from parents on pregnancy and early parenthood services – and how these might be improved.”

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Transforming Canadian Health Care through Consumer Engagement: The Key to Quality and System Innovation – Centre for Health Innovation and Leadership

Posted on April 19, 2011. Filed under: Patient Participation |

Transforming Canadian Health Care through Consumer Engagement: The Key to Quality and System Innovation – Centre for Health Innovation and Leadership
Richard Ivey School of Business, University of Western Ontario

“The purpose of this white paper is to examine promising opportunities for innovation in Canada’s health care system. This report examines opportunities to improve the system’s sustainability in the midst of an immense and burgeoning market for healthcare products, systems and solutions. This report aims to de-compartmentalize many of the policy and programmatic tools and elements of the Canadian health landscape while demonstrating how unification of efforts across health stakeholder communities can transform Canada’s health care system into an entity that achieves productivity, innovation and sustainability.”

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Closing the Gap: Changing Relationships [UK The Health Foundation] – March 2011

Posted on March 18, 2011. Filed under: Patient Participation | Tags: , |

Closing the Gap: Changing Relationships [UK The Health Foundation] – March 2011

“With the complexity of services increasing, it is more important than ever that people are equipped to actively manage their care and that services do not lose the ability to ‘see the person in the patient’.

In Closing the Gap through Changing Relationships, over 2011 and 2012, eight partnerships will be working on projects that aim to build new relationships between people and health services.

This booklet contains overviews and information on the eight projects”  … continues on the site

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Effective Strategies for Interactive Public Engagement in the Development of Healthcare Policies and Programs – Canadian Health Services Research Foundation – 9 March 2011

Posted on March 16, 2011. Filed under: Patient Participation | Tags: |

Effective Strategies for Interactive Public Engagement in the Development of Healthcare Policies and Programs – Canadian Health Services Research Foundation – 9 March 2011
Julia Abelson, PhD

“Summary

Identifying effective strategies for involving the public in healthcare issues is a priority for Canadian health system managers and policy-makers. This synthesis aims to answer an overarching question: What is known about the effectiveness of interactive strategies for engaging the public in the development of healthcare policies and programs?

This report was prepared for and funded by the Canadian Health Services Research Foundation and the New Brunswick Health Research Foundation. As such, attention was paid to aspects of the New Brunswick context relevant to public engagement design, with specific emphasis on interactive public engagement – that is, informed discussion among citizens designed to contribute to decision-making.{”  …continues

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Innovations in Health Literacy – Workshop Summary – IOM – 10 March 2011

Posted on March 11, 2011. Filed under: Patient Participation | Tags: , |

Innovations in Health Literacy – Workshop Summary – IOM – 10 March 2011

“Nearly nine out of 10 adults have difficulty using everyday health information to make good health decisions. Minority and lower socioeconomic groups disproportionately lack health literacy—the degree to which a person can obtain, process, and understand basic health information and services needed to make appropriate health decisions. But are there proven ways to improve health literacy? How can research help illuminate pathways to improved health literacy and better health?

The IOM Roundtable on Health Literacy held a meeting on May 27, 2010, to explore areas for research in health literacy, the relationship between health literacy and health disparities, and ways to apply information technology to improve health literacy. Leaders from three government agencies presented the new National Action Plan to Improve Health Literacy (NAP), and participants examined the role research can play in achieving the goals the NAP sets forth. This document summarizes the workshop.”

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Government transparency: Six Strategies for More Open and Participatory Government – February 2011

Posted on March 10, 2011. Filed under: Health Informatics, Patient Participation |

Government transparency: Six Strategies for More Open and Participatory Government – February 2011

Jon Gant and Nicol Turner-Lee, Government Transparency: Six Strategies for More Open and Participatory Government, Washington, D.C The Aspen Institute, February 2011.

ISBN: 0-89843-542-0

A project of the Aspen Institute Communications and Society Program and the John S. and James L. Knight Foundation

“This paper examines how and why government at every level, particularly at the local level, should embrace emerging ICT technologies and Web 2.0 and 3.0 tools (e.g., social media and collaboration) to enhance their openness and engage citizens more fully. This paper offers several implementation strategies for Recommendation 4 that focus on enhancing government expertise and transparency, educating citizens regarding the availability and utility of government information and e-government tools, expanding efforts to support greater adoption of broadband Internet access services and devices, and forging  public-private-citizen partnerships in order to enhance open government solutions. The purpose of these strategies is to provide a framework for facilitating these objectives and placing government entities on the proper pathway toward the full realization of the benefits of information transparency.”

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In their words: What patients think about our NHS – February 2011

Posted on February 28, 2011. Filed under: Patient Participation | Tags: |

In their words: What patients think about our NHS

“To mark the launch of a brand new version of our website, Patient Opinion is releasing a report ‘In their own words: What patients think about our NHS’, reviewing the last few years of the patient feedback we have received.

The most common areas of concern raised in the report are about the interaction between patient and staff. Above everything else, patients want better communication, considerate staff and more information. These are all things that health service staff could wake up tomorrow and improve immediately. And all this is made easy and accessible for NHS staff through working with Patient Opinion.”

Download In their own words: What patients have been saying about health services over the past 5 years

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The Patient Voice in Revalidation: a discourse analysis – Picker Institute Europe – February 2011

Posted on February 21, 2011. Filed under: Health Professions, Medicine, Patient Participation | Tags: , |

The Patient Voice in Revalidation: a discourse analysis – Picker Institute Europe – February 2011
ISBN 1 905945 -24-8 and 978-1-905945-24-5

“This report presents the findings of a discourse analysis of the patient voice in published documents on medical revalidation. It has been prepared in collaboration with Marion Lynch to inform the work of the South Central Strategic Health Authority Revalidation Board.

The aim of the study was to analyse documents in the public domain to determine where and how the patient is located within discourses about medical revalidation.”

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Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care – IHI White Paper – 2011

Posted on February 14, 2011. Filed under: Evidence Based Practice, Health Systems Improvement, Patient Participation | Tags: |

Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care – IHI White Paper – 2011

Balik B, Conway J, Zipperer L, Watson J. Achieving an Exceptional Patient and Family Experience of Inpatient Hospital Care. IHI Innovation Series white paper. Cambridge, Massachusetts: Institute for Healthcare Improvement; 2011.

“In response to growing interest from the hospital community in better understanding and improving the experience of patients and their families during hospitalization, the Institute for Healthcare Improvement (IHI) conducted an in-depth review of the research, studied exemplar organizations, and interviewed experts in the field. Our aim was to identify the primary and secondary drivers of exceptional patient and family inpatient hospital experience (defined as care that is patient centered, safe, effective, timely, efficient, and equitable), as measured by the Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey’s “willingness to recommend” the hospital.

The project identified five primary drivers of exceptional patient and family inpatient hospital experience of care: leadership; staff hearts and minds; respectful partnership; reliable care; and evidence-based care.”

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A Citizen’s Guide to Health Indicators – Health Council of Canada – January 2011

Posted on February 8, 2011. Filed under: Health Mgmt Policy Planning, Health Policy, Patient Participation | Tags: , |

A Citizen’s Guide to Health Indicators – Health Council of Canada – January 2011

“For individuals with an interest in health care and how to use health information, this resource provides an introduction to health indicators, what they are, where they come from, and how they can influence health care decisions and policies. Health indicators have become a major part of the health information that many Canadians see daily. The guide defines indicators as high-quality statistics or measures that help individuals understand and compare Canadians’ health and health care. “

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Active patient: the case for self-direction in healthcare – University of Birmingham Health Services Management Centre – 5 January 2011

Posted on January 20, 2011. Filed under: Patient Participation |

Active patient: the case for self-direction in healthcare – University of Birmingham Health Services Management Centre – 5 January 2011

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Engaging the public in delivering health improvement: research briefing for practice – Leeds Metropolitan University – 2010

Posted on January 20, 2011. Filed under: Patient Participation, Public Hlth & Hlth Promotion |

Engaging the public in delivering health improvement: research briefing for practice – Leeds Metropolitan University – 2010

South J, Branney P, White J, Gamsu M. Engaging the public in delivering health improvement: Research Briefing. Centre for Health Promotion Research, Leeds Metropolitan University, 2010.  8p.

“Involving members of the public in delivering public health programmes offers a way to utilise the knowledge, skills and resources within communities. Many health promotion projects involve volunteers or lay health workers; they carry out activities such as peer support and peer education, signposting to services and running community groups. Engaging citizens in co-producing health and wellbeing can help services tackle health inequalities by improving connections with less advantaged groups and by shaping provision to better meet community needs.

This research briefing considers what active citizens can do for services and how services can best engage, support and sustain a community or volunteer workforce in order to improve health outcomes. It provides practical guidance on the steps that need to be taken to redesign services and maximise the long term benefits:”   …continues on the site

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Patient-Centred Care: Improving Quality and Safety by Focusing Care on Patients and Consumers discussion paper – Australian Commission on Safety and Quality in Health Care – September 2010

Posted on January 19, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Patient-Centred Care: Improving Quality and Safety by Focusing Care on Patients and Consumers discussion paper – Australian Commission on Safety and Quality in Health Care – September 2010

“This paper provides an in-depth discussion of the concepts and evidence regarding patient centred care; a comprehensive review of international approaches and activities; and an examination of some of the national, jurisdictional and other policies and activities in Australia to support patient-centred care. It focuses on strategies that healthcare organisations can use to support patient-centred care.”

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Choosing a high-quality hospital: The role of nudges, scorecard design and information – The King’s Fund – 18 November 2010

Posted on January 19, 2011. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation | Tags: |

Choosing a high-quality hospital: The role of nudges, scorecard design and information – The King’s Fund – 18 November 2010
88 pages ISBN: 978 1 85717 603 2

Summary

“Patient choice, particularly the choice of hospital, has been at the heart of health policy for a number of years. The aim of this policy is to create competition, which in turn drives improvements in quality; for this to work effectively, patients have to make their choices on the basis of clinical quality. Significant resources have been devoted to offering patients more information to help them make their choices. But do people use the information that is available?

Choosing a high-quality hospital explores how information can help patients to make informed choices. It is based on a research study, which began with a series of focus group discussions, the results of which informed the design of an online experiment.  People were presented with information using a number of different ‘scorecards’ comparing the performance of hospital, and different ‘nudges’ were used to influence their choices.”  …continues on the site

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Involving the public in healthcare policy: An update of the research evidence and proposed evaluation framework – RAND Corporation – 2010

Posted on January 14, 2011. Filed under: Health Policy, Patient Participation | Tags: |

Involving the public in healthcare policy: An update of the research evidence and proposed evaluation framework – RAND Corporation – 2010
Pages: 81
Document Number: TR-850-BF
Year: 2010
Series: Technical Reports

“Public involvement has been advocated as a means to enhance the responsiveness of healthcare systems. Yet despite its obvious appeal, the concept has remained poorly defined and its rationale and objectives are rarely specified when applied to the healthcare sector. This report aims to update existing work on both the conceptual and the empirical evidence for public involvement in healthcare policy. We draw on a comprehensive review of the published literature, supplemented by exploratory observations from selected public involvement initiatives in different health system contexts.

Despite a growing literature base, the concept of “public involvement” remains poorly defined although as a complex and multidimensional phenomenon a call for simple clarification of the concept may not be desirable. Public involvement practice varies by underlying rationale, public motivation to become involved, and specific mechanisms and their relationship to wider social processes. We propose to interpret the term “involvement” as a descriptive umbrella term for the spectrum of processes and activities that bring the public into the decision-making process as it has the benefit of providing a fuller picture of potential involvement, which is independent of normative assumptions.

Sound empirical evidence of the outcomes of public involvement activities in healthcare remains underdeveloped. We find evidence for the developmental role of public involvement while the evidence for instrumental benefits of public involvement initiatives is less well documented. Yet overly focusing on outcomes of public involvement risks missing the normative argument that involving the public in the process may be seen to be of intrinsic value in itself.”

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Personalised healthcareMedical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age – Nuffield Council on Bioethics – October 2010

Posted on January 11, 2011. Filed under: Health Informatics, Patient Participation | Tags: |

Personalised healthcare: medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age – Nuffield Council on Bioethics – October 2010

“New developments in medical profiling and online medicine are promised by their providers as leading to a new era of ‘personalised healthcare’.

These developments include direct-to-consumer personal genetic profiling and body imaging, and websites that provide health advice, storage of health records and medicines for sale. This report weighs up the benefits and harms, along with the ethical values that come into play.”

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The Pursuit of Genuine Partnerships with Patients and Family Members: The Challenge and Opportunity for Executive Leaders – IHI – 2010

Posted on October 18, 2010. Filed under: Patient Participation | Tags: |

The Pursuit of Genuine Partnerships with Patients and Family Members: The Challenge and Opportunity for Executive Leaders – Jane Taylor, Patricia Rutherford   Frontiers of Health Services Management 2010   26:4: 3-14

“Summary • Empowering patients to control their own healthcare experiences, sharing decisions with patients and family members, being open and transparent, and anticipating patient needs create fresh partnerships between healthcare professionals and patients. The “new rules” the Institute of Medicine (IOM) defined in its 2001 report Crossing the Quality Chasm provide  guidance for leading a cultural transformation in which clinic and hospital staff truly partner with patients and their family members. The resulting experiences inspire patients to say, “They give me exactly the care I want and need, exactly where and how I want and need it” (Berwick 2009). Improved health outcomes and patients who control their own hospital stays are simple concepts that are difficult to execute. Some may view these new relationships as disruptive to clinical decision making; others may see no need to change the way they’ve always done things.

Executives are called to lead a cultural transformation—that is, to shape the views, perspectives, and behaviors of the  individuals throughout their organization to achieve patient- and family-centered care. This article uses Kouzes and Posner’s (2007) leadership framework to outline how executive leaders might embrace this challenge and accomplish profound change. We support this idea with examples from our practice at the Institute for Healthcare Improvement.”

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Taking Care of Myself: A Guide for When I Leave the Hospital – AHRQ – 2010

Posted on October 15, 2010. Filed under: Health Systems Improvement, Patient Participation | Tags: , , |

Taking Care of Myself: A Guide for When I Leave the Hospital – AHRQ – 2010

AHRQ = Agency for Healthcare Research and Quality

Taking Care of Myself: A Guide for When I Leave the Hospital is a guide for patients to help them care for themselves when they leave the hospital. The easy-to-read guide can be used by both hospital staff and patients during the discharge process and provides a way for patients to track their medication schedules, upcoming medical appointments, and important phone numbers.

About the Guide
Taking Care of Myself: A Guide for When I Leave the Hospital is adapted from the Project RED (Re-Engineered Discharge), which was funded by the Agency for Healthcare Research and Quality and the National Heart, Lung, and Blood Institute and operated by the Boston University Medical Center. Project RED showed that preparing patients to care for themselves when they leave the hospital can improve patient safety and reduce re-hospitalization rates. Giving patients an easy-to-understand discharge plan is 1 of 11 elements in the RED process.

More information about Project RED and tools to support some of the other elements of the RED can be obtained [on the website]. 

More detailed tools for implementing RED, and revisions of existing tools to ensure that diverse populations—especially patients with limited English proficiency, are now being developed. The tools will be completed by late 2012 and posted on the AHRQ Web site and the Boston University Medical Center’s Project RED Web site.

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People in Public Health – a study of approaches to develop and support people in public health roles – July 2010

Posted on September 29, 2010. Filed under: Community Services, Patient Participation, Public Hlth & Hlth Promotion | Tags: |

 

People in Public Health – a study of approaches to develop and support people in public health roles – July 2010

Report for the National Institute for Health Research Service Delivery and Organisation programme

Extract from the introduction:

‘People in Public Health’ is a study about approaches to develop and support lay people in public health roles. The use of participatory approaches in public health programmes, both in national and international contexts, is well established and seen as necessary to deliver sustainable improvements in public health (Bracht and Tsouros, 1990; Rifkin et al., 2000; World Health Organization, 2002). Indeed a central argument in the Wanless reviews was that a ‘fully engaged scenario’ with high levels of public engagement in health would result in lower levels of public expenditure and better health outcomes (Wanless, 2002; Wanless, 2004). Government policy supports greater community engagement in health as a means of addressing public health priorities and tackling health inequalities (Department of Health, 2003). The health agenda on community involvement resonates with arguments for citizen empowerment and greater democratisation of services, not only in the NHS but across the public sector, in national agencies and local authorities (Campbell et al., 2008).”

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[US] GAO Announces Appointments to New Patient-Centered Outcomes Research Institute (PCORI) Board of Governors – 23 September 2010

Posted on September 28, 2010. Filed under: Patient Participation |

[US] GAO Announces Appointments to New Patient-Centered Outcomes Research Institute (PCORI) Board of Governors – 23 September 2010

Extract from the GAO press release

“The Patient Protection and Affordable Care Act of 2010 established PCORI as a non-profit organization to assist patients, clinicians, purchasers, and policy-makers in making informed health decisions by carrying out research projects that provide quality, relevant evidence on how diseases, disorders, and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed. The Act directs the Comptroller General to appoint 19 of the 21 members of the PCORI Board of Governors. In addition to these 19 members appointed today, the Director of the Agency for Healthcare Research and Quality and the Director of the National Institutes of Health, or their designees, are the other two members who will serve on the PCORI Board.”

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The intelligent board 2010: patient experience – Dr Foster – September 2010

Posted on September 22, 2010. Filed under: Clin Governance / Risk Mgmt / Quality, Patient Participation |

The intelligent board 2010: patient experience – Dr Foster – September 2010

Extract from the Foreword:

NHS boards face a tough job in ensuring a proper focus on patients’ experiences in the current climate of radical reform, changing demography and stringent efficiency demands. This Intelligent Board is a practical resource to help you do so, not just because it is the right thing to do and a core theme of government policy, but because it makes sense – in avoiding the resources wasted by failing to meet patients’ needs, in attracting patients, in achieving good outcomes and in motivating that most crucial resource, staff.  …continues

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