Co-designing new tools for collecting, analysing and presenting patient experience data in NHS services: working in partnership with patients and carers

Abstract Background The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors, to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data. Methods Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data. Results PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the study. Conclusions Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).

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Involving Persons with Dementia in Social Research: A Literature Review

Innovation in Aging ◽

10.1093/geroni/igab046.2424 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 643-643

Author(s):

Pamela Manley ◽

Candace Kemp

Keyword(s):

Literature Review ◽

Public Involvement ◽

Social Research ◽

Research Process ◽

Patient And Public Involvement ◽

Emotional Expressions ◽

Participatory Action ◽

Research Participants ◽

Centered Care ◽

Dementia Research

Abstract Studies involving persons with dementia as research participants have increased over the years, due in part to an emphasis on patient and public involvement in health care and participatory action research. Recent studies indicate a growing trend toward engaging persons with dementia, not only as participants, but also as co-researchers. Further, studies involving persons with dementia as co-researchers and advisers have garnered increased attention due to the inclusion of this population’s unique perspectives and lived experiences. Theoretically, frameworks such as person-centered- and relationship-centered care, also influence and shape the research process. This literature review examines empirical research conducted over the past decade that reports the involvement of persons with dementia as research participants (“research on”) and co-researchers and advisers (“research with”). Among the 27 articles identified, 12 reported “research on,” and 15 reported “research with” persons with dementia. “Research on” targeted participants’ emotional expressions/responses, engagement in exercise/activities; social environment influences, and cognitive training; whereas “research with,” which was mostly qualitative, focused on co-researchers’ perspectives of and experiences with the research process; needs, priorities, and recommendations in research planning; partnering with persons with dementia on the design and development of research instruments, and the importance of critically evaluating the research process. Findings documenting research challenges, complexities, and ethical concerns are also discussed. Overall, findings demonstrate the feasibility of involving persons with dementia in a meaningful way and further affirms that including them as co-researchers is not only beneficial, but has the potential to enhance the entire research process.

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Collaboration with people with lived experience of prison: reflections on researching cancer care in custodial settings

Research Involvement and Engagement ◽

10.1186/s40900-021-00284-z ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Renske Visser ◽

Alyce-Ellen Barber ◽

Anthony X ◽

Sue Wheatcroft ◽

Philip Mullen ◽

...

Keyword(s):

Lived Experience ◽

Cancer Care ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Third Party ◽

Working Relationships ◽

Care Needs ◽

Academic Researchers ◽

No Harm Principle

Abstract Background Patient and public involvement is increasingly considered important in health research. This paper reflects, from both academic and lived experience perspectives, on involving people with lived experience in a study exploring cancer care in prison and how by doing this it enriched the research process. Methods This paper is based on written and verbal reflections of the lived experience researchers and academic researchers involved in a study exploring the diagnosis and treatment of people with cancer in prison. The study comprised interviews with people with cancer in prison, prison healthcare staff, oncology specialists and custodial staff. Lived experience researchers were involved throughout the research process, including co-conducting interviews with patients and analysing interviews. Results This paper highlights the importance and value of including lived experience researchers across the research process. We reflect on how lived experience of prison shapes the experience of conducting interviews and analysing data gathered in prison. We reflect on the working relationships between academic and lived experience researchers. We demonstrate how prison research is challenging, but collaboration between lived experience and academic researchers can help to better prepare for the field, to ask more meaningful questions and to create rapport with participants. These types of collaborations can be powerful avenues for skill development for both academic and lived experience researchers, but they require an investment of time and a willingness for shared learning. Conclusions For academics and lived experience researchers to collaborate successfully and meaningfully care needs to be taken to develop open, honest and equal working relationships. Skills development for academic and lived experience researchers is important. A commitment to building and maintaining relationships is crucial. Having a third party as a mediator can facilitate and foster these relationships. Particularly with people with lived experience of prison it is essential to put the ‘do no harm’ principle into practice and to have support in place to minimise this.

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Patient and Public Involvement in Sexual and Reproductive Health: Time to Properly Integrate Citizen’s Input into Science

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph17218048 ◽

2020 ◽

Vol 17 (21) ◽

pp. 8048

Author(s):

Miguel García-Martín ◽

Carmen Amezcua-Prieto ◽

Bassel H Al Wattar ◽

Jan Stener Jørgensen ◽

Aurora Bueno-Cavanillas ◽

...

Keyword(s):

Reproductive Health ◽

Health Research ◽

Sexual And Reproductive Health ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Research Subjects ◽

Societal Benefits ◽

Participation Of Women ◽

Quality Tools

Evidence-based sexual and reproductive health is a global endeavor without borders. Inter-sectorial collaboration is essential for identifying and addressing gaps in evidence. Health research funders and regulators are promoting patient and public involvement in research, but there is a lack of quality tools for involving patients. Partnerships with patients are necessary to produce and promote robust, relevant and timely research. Without the active participation of women as stakeholders, not just as research subjects, the societal benefits of research cannot be realized. Creating and developing platforms and opportunities for public involvement in sexual and reproductive health research should be a key international objective. Cooperation between healthcare professionals, academic institutions and the community is essential to promote quality research and significant developments in women’s health. This cooperation will be improved when involvement of citizens in the research process becomes standard.

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How to engage patient partners in health service research: a scoping review protocol

Research Involvement and Engagement ◽

10.1186/s40900-021-00268-z ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Sarah Cecilie Tscherning ◽

Hilary Louise Bekker ◽

Tina Wang Vedelø ◽

Jeanette Finderup ◽

Lotte Ørneborg Rodkjær

Keyword(s):

Health Service ◽

Narrative Analysis ◽

Scoping Review ◽

Health Service Research ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Service Research ◽

Review Protocol ◽

The Impact

Abstract Background The patients’ and the carers’ roles in health service research has changed from being solely participants in studies to also being active partners and co-designers in the research process. Research carried out with or by patient partners is an increasingly accepted component of health service research in many countries, but how researchers can best approach engaging patient partners in the research process is still not clear. There is a need for guidance to support researchers when engaging patient partners and assess how such engagement impacts on research outputs. The aim of this paper is to present a protocol for a scoping review of published literature on how to engage patient partners effectively in the research process. Investigating this aim implies examining: a) how to engage patient partners in the research process; and b) what impact such engagement has on research outputs. This scoping review protocol is the first to examine how to engage patient partners effectively across different diseases and research areas. Methods A scoping review using a systematic process informed by Arksey and O’Malley’s framework will be carried out across six electronic databases using the terms ‘patient participation’, ‘community participation’, ‘research personnel’, ‘patient and public involvement’ and ‘patient partner’. We will include published reviews concerning engagement of patient partners in the research process in healthcare settings, and exclude studies assessing engagement in treatment and healthcare. Two reviewers will screen the titles and abstracts of articles independently for inclusion, and extract data from articles that meet the inclusion criteria. Where there is disagreement, a third reviewer will be consulted to facilitate consensus. The data elicited will include: author and study characteristics; research aims and findings; description of patient engagement in the research process; and assessment impact. Descriptive data and narrative analysis will synthesize findings. Discussion To understand how to engage patient partners effectively in the research process, the impact of such engagement must be taken into consideration to give a qualified suggestion for future guidance. We hope this review will raise awareness of which common elements constitute effective engagement of patient partners in the research process.

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Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study

BMJ Open ◽

10.1136/bmjopen-2017-020452 ◽

2018 ◽

Vol 8 (3) ◽

pp. e020452 ◽

Cited By ~ 31

Author(s):

Amy Price ◽

Sara Schroter ◽

Rosamund Snow ◽

Melissa Hicks ◽

Rebecca Harmston ◽

...

Keyword(s):

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Research Papers ◽

The Public ◽

Reporting Requirements ◽

Grant Applications ◽

Before And After ◽

Low Levels ◽

Optional Extra

ObjectivesWhile documented plans for patient and public involvement (PPI) in research are required in many grant applications, little is known about how frequently PPI occurs in practice. Low levels of reported PPI may mask actual activity due to limited PPI reporting requirements. This research analysed the frequency and types of reported PPI in the presence and absence of a journal requirement to include this information.Design and settingA before and after comparison of PPI reported in research papers published inThe BMJbefore and 1 year after the introduction of a journal policy requiring authors to report if and how they involved patients and the public within their papers.ResultsBetween 1 June 2013 and 31 May 2014,The BMJpublished 189 research papers and 1 (0.5%) reported PPI activity. From 1 June 2015 to 31 May 2016, following the introduction of the policy,The BMJpublished 152 research papers of which 16 (11%) reported PPI activity. Patients contributed to grant applications in addition to designing studies through to coauthorship and participation in study dissemination. Patient contributors were often not fully acknowledged; 6 of 17 (35%) papers acknowledged their contributions and 2 (12%) included them as coauthors.ConclusionsInfrequent reporting of PPI activity does not appear to be purely due to a failure of documentation. Reporting of PPI activity increased after the introduction ofThe BMJ’s policy, but activity both before and after was low and reporting was inconsistent in quality. Journals, funders and research institutions should collaborate to move us from the current situation where PPI is an optional extra to one where PPI is fully embedded in practice throughout the research process.

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Patient and public involvement (PPI) in prisons: the involvement of people living in prison in the research process – a systematic scoping review

Health & Justice ◽

10.1186/s40352-021-00154-6 ◽

2021 ◽

Vol 9 (1) ◽

Author(s):

Samantha Treacy ◽

Steven Martin ◽

Nelum Samarutilake ◽

Tine Van Bortel

Keyword(s):

Systematic Review ◽

Scoping Review ◽

Public Involvement ◽

Social Care ◽

Positive Impact ◽

Research Process ◽

Evidence Base ◽

Patient And Public Involvement ◽

Care Research ◽

Health And Social Care

Abstract Background Patient and Public Involvement (PPI) in health and social care research is increasingly prevalent and is promoted in policy as a means of improving the validity of research. This also applies to people living in prison and using social care services. Whilst evidence for the effectiveness of PPI was limited and reviews of its application in prisons were not found, the infancy of the evidence base and moral and ethical reasons for involvement mean that PPI continues to be advocated in the community and in prisons. Objectives To conduct a review of the literature regarding the involvement of people or persons living in prison (PLiP) in health and social care research focused on: (i) aims; (ii) types of involvement; (iii) evaluations and findings; (iv) barriers and solutions; and (v) feasibility of undertaking a systematic review. Methods A systematic scoping review was undertaken following Arksey and O’Malley’s (International Journal of Social Research Methodology 8: 19-32, 2005) five-stage framework. A comprehensive search was conducted involving ten electronic databases up until December 2020 using patient involvement and context related search terms. A review-specific spreadsheet was created following the PICO formula, and a narrative synthesis approach was taken to answer the research questions. PRISMA guidelines were followed in reporting. Results 39 papers were selected for inclusion in the review. The majority of these took a ‘participatory’ approach to prisoner involvement, which occurred at most stages during the research process except for more ‘higher’ level research operations (funding applications and project management), and only one study was led by PLiPs. Few studies involved an evaluation of the involvement of PLiP, and this was mostly PLiP or researcher reflections without formal or independent analysis, and largely reported a positive impact. Barriers to the involvement of PLiP coalesced around power differences and prison bureaucracy. Conclusion Given the very high risk of bias arising from the available ‘evaluations’, it was not possible to derive firm conclusions about the effectiveness of PLiP involvement in the research process. In addition, given the state of the evidence base, it was felt that a systematic review would not be feasible until more evaluations were undertaken using a range of methodologies to develop the field further.

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ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Health Services and Delivery Research ◽

10.3310/hsdr03380 ◽

2015 ◽

Vol 3 (38) ◽

pp. 1-176 ◽

Cited By ~ 81

Author(s):

Patricia Wilson ◽

Elspeth Mathie ◽

Julia Keenan ◽

Elaine McNeilly ◽

Claire Goodman ◽

...

Keyword(s):

Case Studies ◽

Study Design ◽

Research Team ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Realist Evaluation ◽

Research Network ◽

Normalisation Process Theory ◽

The Impact

BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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A study of the reporting of patient and public involvement and engagement (PPIE) in orthodontic research

Journal of Orthodontics ◽

10.1177/1465312520968574 ◽

2020 ◽

pp. 146531252096857

Author(s):

Veena A Patel ◽

Jonathan Shelswell ◽

Neil Hillyard ◽

Sue Pavitt ◽

Sophy K Barber

Keyword(s):

Medical Research ◽

Public Engagement ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Research Articles ◽

Sources Of Information ◽

Research Activity ◽

High Quality Research ◽

Research Reporting

Introduction: Patient and public involvement and engagement (PPIE) in research is an essential component of high-quality research. Patients and the public can identify which research topics are most relevant to them, contribute to study design, and interpretation and dissemination of findings. While inclusion of PPIE is widely adopted in medical research, awareness within the dental research community is more limited. Aim: To examine patient and public involvement and engagement in orthodontic research activity. Design: Identification and appraisal of use of PPIE in orthodontic research reporting and funding applications using a systematic approach. Methods: Three sources of information were examined: (1) research articles published between September 2018 and September 2019 in four major orthodontic journals. Articles were examined for reported PPIE; (2) common funding bodies for orthodontic research were assessed to establish whether PPIE was mandated (National Institute for Health Research, Medical Research Council, Wellcome Trust, Chief Scientist Office (Scotland), Health and Care Research Wales, British Orthodontic Society Foundation, Royal College of Surgeons and CLEFT); and (3) publication guidance for authors in these journals was examined to identify whether reporting of PPIE was included. Results: Of the 363 research articles, 2 (0.6%) mention patient/public involvement. None of the 363 research articles mention patient/public engagement. Of nine funding bodies, 2 (22%) request evidence of patient/public involvement as a condition of receiving funding with one (11%) expecting evidence of public engagement to be provided as a condition of receiving funding. None of the four major orthodontic journals include patient/public involvement and/or engagement in their guidance for authors. Conclusion: There is currently: (1) a notable lack of reporting of PPIE in orthodontic research; (2) variability in the requirements of funding bodies for researchers to include PPIE in funding applications and throughout the research process; and (3) no stipulation in journals’ instructions for authors.

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