Establishing the values for patient engagement (PE) in health-related quality of life (HRQoL) research: an international, multiple-stakeholder perspective

PurposeActive patient engagement is increasingly viewed as essential to ensuring that patient-driven perspectives are considered throughout the research process. However, guidance for patient engagement (PE) in HRQoL research does not exist, the evidence-base for practice is limited, and we know relatively little about underpinning values that can impact on PE practice. This is the first study to explore the values that should underpin PE in contemporary HRQoL research to help inform future good practice guidance. MethodsA modified ‘World Café’ was hosted as a collaborative activity between patient partners, clinicians and researchers: self-nominated conference delegates participated in group discussions to explore values associated with the conduct and consequences of PE. Values were captured via post-it notes and by nominated note-takers. Data were thematically analysed: emergent themes were coded and agreement checked. Association between emergent themes, values and the Public Involvement Impact Assessment Framework were explored. ResultsEighty participants, including 12 patient partners, participated in the 90-min event. Three core values were defined: (1) building relationships; (2) improving research quality and impact; and (3) developing best practice. Participants valued the importance of building genuine, collaborative and deliberative relationships—underpinned by honesty, respect, co-learning and equity—and the impact of effective PE on research quality and relevance. Conclusions An explicit statement of values seeks to align all stakeholders on the purpose, practice and credibility of PE activities. An innovative, flexible and transparent research environment was valued as essential to developing a trustworthy evidence-base with which to underpin future guidance for good PE practice.Peer reviewe

Women's views of continuity of information provided during and after pregnancy: A qualitative interview study

Straightforward transfer of care from pregnancy to the postpartum period is associated with health benefits and is desired by women worldwide. Underpinning this transfer of care is the sharing of information between healthcare professionals and the provision of consistent information to women. In this qualitative study, two aspects of continuity of information were examined; first the information passed on from midwife to health visitor regarding a woman and her baby before the health visitor meets the woman postnatally and second, the consistency of information received by women from these two healthcare professionals (the main healthcare providers during and after pregnancy in England). To be eligible for the study, women had to have had a baby in England within 12 months prior to the interview. Participants also needed to be able to read and speak English and be over 18 years old. Recruitment of participants was via word of mouth and social media. Twenty-nine mothers were interviewed of whom 19 were first time mothers. The interviews took place in the summer and autumn of 2016 and were transcribed verbatim and analysed using Framework Analysis. Two overarching themes were identified: not feeling listened to and information inconsistencies. Women reported little experience of midwives and health visitors sharing information about their care, forcing women to repeat information. This made women feel not listened to and participants recommended that healthcare professionals share information; prioritising information about labour, mental health, and chronic conditions. Women had mixed experiences regarding receiving information from midwives and health visitors, with examples of both consistent and inconsistent information received. To avoid inconsistent information, joint appointments were recommended. Findings from this study clearly suggest that better communication pathways need to be developed and effectively implemented for midwives and health visitors to improve the care that they provide to women

A qualitative study of the experiences and expectations of women receiving in-patient postnatal care in one English maternity unit

Background Studies consistently highlight in-patient postnatal care as the area of maternity care women are least satisfied with. As part of a quality improvement study to promote a continuum of care from the birthing room to discharge home from hospital, we explored women’s expectations and experiences of current inpatient care. Methods For this part of the study, qualitative data from semi-structured interviews were transcribed and analysed using content analyses to identify issues and concepts. Women were recruited from two postnatal wards in one large maternity unit in the South of England, with around 6,000 births a year. Results Twenty women, who had a vaginal or caesarean birth, were interviewed on the postnatal ward. Identified themes included; the impact of the ward environment; the impact of the attitude of staff; quality and level of support for breastfeeding; unmet information needs; and women’s low expectations of hospital based postnatal care. Findings informed revision to the content and planning of in-patient postnatal care, results of which will be reported elsewhere. Conclusions Women’s responses highlighted several areas where changes could be implemented. Staff should be aware that how they inter-act with women could make a difference to care as a positive or negative experience. The lack of support and inconsistent advice on breastfeeding highlights that units need to consider how individual staff communicate information to women. Units need to address how and when information on practical aspects of infant care is provided if women and their partners are to feel confident on the woman’s transfer home from hospital

Developing the Warwick Patient Experiences Framework (WaPEF): Utilising patient-based evidence to shape clinical guidelines International Journal of Quality in Healthcare

Objective This paper presents the development of the Warwick Patient Experiences Framework (WaPEF) and describes how it informed the development of the NICE Guidance and Quality Standard, ‘Patient experience in adult NHS services: improving the experience of care for people using adult NHS services’. Design The WaPEF was developed using a thematic qualitative overview that utilized a systematic review approach. Search strategies were developed, inclusion and exclusion criteria developed and data extracted from papers. Results The WaPEF identifies seven key generic themes that are important to a high-quality patient experience: patient as active participant, responsiveness of services, an individualized approach, lived experience, continuity of care and relationships, communication, information and support. Conclusions The WaPEF is the first patient experiences framework with an explicit link to an underpinning patient evidence base, linking themes and sub-themes with specific references. The WaPEF informed the structure and content of the NICE Patient Experiences Guidance. The guidance, published in February 2012, will form a key part of the NHS Outcomes Framework in the UK for the future evaluation of health and social care. The proposed framework could be adapted to other country contexts and settings

What does "good" community and public engagement look like? Developing relationships with community members in global health research

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does "good" CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what "good" CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what "good" CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community. [Abstract copyright: Copyright © 2022 Hickey, Porter, Tembo, Rennard, Tholanah, Beresford, Chandler, Chimbari, Coldham, Dikomitis, Dziro, Ekiikina, Khattak, Montenegro, Mumba, Musesengwa, Nelson, Nhunzvi, Ramirez and Staniszewska.

What Does “Good” Community and Public Engagement Look Like? Developing Relationships With Community Members in Global Health Research

Community and public engagement (CPE) is increasingly becoming a key component in global health research. The National Institute for Health Research (NIHR) is one of the leading funders in the UK of global health research and requires a robust CPE element in the research it funds, along with CPE monitoring and evaluation. But what does “good” CPE look like? And what factors facilitate or inhibit good CPE? Addressing these questions would help ensure clarity of expectations of award holders, and inform effective monitoring frameworks and the development of guidance. The work reported upon here builds on existing guidance and is a first step in trying to identify the key components of what “good” CPE looks like, which can be used for all approaches to global health research and in a range of different settings and contexts. This article draws on data collected as part of an evaluation of CPE by 53 NIHR-funded award holders to provide insights on CPE practice in global health research. This data was then debated, developed and refined by a group of researchers, CPE specialists and public contributors to explore what “good” CPE looks like, and the barriers and facilitators to good CPE. A key finding was the importance, for some research, of investing in and developing long term relationships with communities, perhaps beyond the life cycle of a project; this was regarded as crucial to the development of trust, addressing power differentials and ensuring the legacy of the research was of benefit to the community

Exploring the challenge of health research priority setting in partnership: reflections on the methodology used by the James Lind Alliance Pressure Ulcer Priority Setting Partnership

Background: Studies identifying a mismatch between the priorities of academics and clinicians and those of people with direct experience of a health condition pose a challenge to the assumption that professional researchers can represent the interests of patients and the public in setting priorities for health research. The James Lind Alliance (JLA) brings patients, carers and clinicians together in Priority Setting Partnerships (PSPs) to identify and prioritise shared uncertainties about the effects of treatment. There is no formal evaluation yet to examine the different approaches used by individual PSPs and the impact these methods have on the quality of the partnership and subsequent outputs. There is no gold standard method for health research topic identification and priority setting and reporting on public involvement in this area is predominantly descriptive rather than evaluative. Methods and Findings: The JLA Pressure Ulcer PSP (JLAPUP) was developed and worked between 2009 and 2013 to identify and prioritise the top 10 ‘uncertainties’, or ‘unanswered questions’, about the effects of pressure ulcer interventions. JLAPUP identified a mismatch between the nature and quality of RCTs in pressure ulcer prevention and treatment and the kind of research evidence desired by patients or service users, carers and health professionals. Results and methods have been reported fully elsewhere. The consultative and deliberative methods used to establish health research priorities in PSPs are fundamentally interpretive. PSPs are therefore an arena in which ‘hard’ evidence-informed ideals meet ‘soft’ participatory practices. This article provides an account of the challenges faced in one particular PSP. We explain the rationale for the approaches taken, difficulties faced and the limitations at each stage, because these aspects are particularly under-reported. The JLAPUP case is used to identify possible areas for evaluation and reporting across PSPs. Conclusion: Engaging people with very different health and life experiences in the complexities of health science based discussions of uncertainty is challenging. This is particularly the case when engaging groups routinely excluded from participating in health research, for example, older people with multiple comorbidities. The JLA principles of transparency, inclusivity and avoiding waste in research require paying close critical attention to PSP methodology, including full evaluation and reporting of PSP processes and outcomes. Assessing the impact of PSPs is contingent on the decision making processes of commissioners and funders

Patient and public involvement in health literacy interventions: a mapping review

Background: Health literacy is a critical mediating factor that impacts on the health of older adults. Patient and public involvement in health and social care research, policy and design of care delivery is one mechanism that can promote production of better health literacy. This mapping review looks for and describes practices, concepts and methods that have been reported involving patients, public and (non-researcher) professionals in the development and design of health literacy interventions for older people. Methods: Studies that aimed to improve health literacy were identified within a previously created compatible inventory of health behaviour studies for older people. Articles were screened for whether they addressed health literacy and featured involvement of stakeholders other than investigators and patients. Two reviewers independently read each study to identify any patient, public and professional involvement in the research process. We also noted some aspects of outcomes. Results: Twenty-two studies included patient, public and/or professional involvement in at least one research domain: design, management or evaluation. Involvement included volunteers, older people, professionals, patients, and community representatives. All studies were driven by an organisational or biomedical agenda. Conclusions: Patient, public and professional involvement wasrarely reported in studies on health literacy interventions for older people. This could help explain why some interventions fail to improve health literacy in older people. Key words – health literacy intervention research, older people, patient and public involvement, mapping revie

The GRIPP 2 reporting checklists: tools to improve reporting of patient and public involvement in research

Background: While the PPI evidence base has expanded over the last decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom and why. Objective: To develop international consensus on the key items to report to enhance the quality, transparency and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP 2. Methods: The EQUATOR method for developing reporting guidelines was utilised. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results: 143 participants agreed to participate in round 1, with an 86% (123/143) response for round 2 and a 78% (112/143) response for round 3. The Delphi survey identified the need for long-form (LF) and short-form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment and reflections, and is suitable for studies where the main focus is PPI. GRIPP2-SF includes 5 items on aims, methods, results, outcomes and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions: GRIPP2-LF and GRIPP2-SF represent the first international evidence-based, consensus-informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. GRIPP 2 is co-published with Research Involvement and Engagement

The GRIPP 2 reporting checklists: tools to improve reporting of patient and public involvement in research

Background: While the PPI evidence base has expanded over the last decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom and why. Objective: To develop international consensus on the key items to report to enhance the quality, transparency and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP 2. Methods: The EQUATOR method for developing reporting guidelines was utilised. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results: 143 participants agreed to participate in round 1, with an 86% (123/143) response for round 2 and a 78% (112/143) response for round 3. The Delphi survey identified the need for long-form (LF) and short-form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment and reflections, and is suitable for studies where the main focus is PPI. GRIPP2-SF includes 5 items on aims, methods, results, outcomes and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions: GRIPP2-LF and GRIPP2-SF represent the first international evidence-based, consensus-informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. GRIPP 2 is co-published with Research Involvement and Engagement