Editorial: Patient and public involvement in dementia research: Setting new standards

ObjectivesWe aimed to evaluate the impact of patient and public involvement (PPI) at each stage of the research cycle in a dementia research programme.DesignWe used monitoring forms to record the impact of the research programme’s PPI at different stages of research and qualitative interviews with all participants to evaluate the impact of PPI.SettingWe evaluated Research User Groups (RUGs—older people with dementia and care partners) which were established to provide PPI support for the research programme in multiple European sites.ParticipantsWe purposively sampled RUG members (n=34) and researchers (n=13) who had participated in PPI activities. Inclusion criteria for the study were: (a) RUG members who had participated in the research awareness training and in PPI activities and had the capacity to consent; (b) researchers who involved RUGs in their work.ResultsImpact on the research: changes to the study conduct were made as a result of the feedback from RUGs. These included prioritisation of clinical recommendations, the wording of study information and recruitment materials, the content and layout of the user interface for a computerised memory test, interpretation of intervention results and advice on dissemination avenues. Impact on RUG members: they reported that involvement had given them a sense of purpose and satisfaction. Their perception of health research changed from being an exclusive activity to one, which lay people, could have meaningful involvement. Impact on researchers: PPI was a new way of working and interacting with PPI members had given them insight into the impact of their work on people living with dementia.ConclusionsPPI can have a substantial impact on dementia research and the people involved in the research. To justify the time and expense of PPI, the advantageous practical impacts of PPI should be systematically recorded and consistently reported.

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Exploring the Impact of Patient and Public Involvement in a Cancer Research Setting

Qualitative Health Research ◽

10.1177/1049732313514482 ◽

2013 ◽

Vol 24 (1) ◽

pp. 46-54 ◽

Cited By ~ 32

Author(s):

Jill Thompson ◽

Paul Bissell ◽

Cindy L. Cooper ◽

Chris J. Armitage ◽

Rosemary Barber

Keyword(s):

Cancer Research ◽

Public Involvement ◽

Patient And Public Involvement ◽

Research Setting ◽

The Impact

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Patient and Public Involvement for Dementia Research in Low- and Middle-Income Countries: Developing Capacity and Capability in South Asia

Frontiers in Neurology ◽

10.3389/fneur.2021.637000 ◽

2021 ◽

Vol 12 ◽

Author(s):

Jahanara Miah ◽

Saima Sheikh ◽

Rachel C. Francis ◽

Gayathri Nagarajan ◽

Sojan Antony ◽

...

Keyword(s):

South Asia ◽

Study Protocol ◽

Public Engagement ◽

Online Survey ◽

Public Involvement ◽

Research Process ◽

Patient And Public Involvement ◽

Middle Income ◽

Middle Income Countries ◽

Dementia Research

Background: Patient and public involvement (PPI) is an active partnership between the public and researchers in the research process. In dementia research, PPI ensures that the perspectives of the person with “lived experience” of dementia are considered. To date, in many lower- and middle-income countries (LMIC), where dementia research is still developing, PPI is not well-known nor regularly undertaken. Thus, here, we describe PPI activities undertaken in seven research sites across South Asia as exemplars of introducing PPI into dementia research for the first time.Objective: Through a range of PPI exemplar activities, our objectives were to: (1) inform the feasibility of a dementia-related study; and (2) develop capacity and capability for PPI for dementia research in South Asia.Methods: Our approach had two parts. Part 1 involved co-developing new PPI groups at seven clinical research sites in India, Pakistan and Bangladesh to undertake different PPI activities. Mapping onto different “rings” of the Wellcome Trust's “Public Engagement Onion” model. The PPI activities included planning for public engagement events, consultation on the study protocol and conduct, the adaptation of a study screening checklist, development and delivery of dementia training for professionals, and a dementia training programme for public contributors. Part 2 involved an online survey with local researchers to gain insight on their experience of applying PPI in dementia research.Results: Overall, capacity and capability to include PPI in dementia research was significantly enhanced across the sites. Researchers reported that engaging in PPI activities had enhanced their understanding of dementia research and increased the meaningfulness of the work. Moreover, each site reported their own PPI activity-related outcomes, including: (1) changes in attitudes and behavior to dementia and research involvement; (2) best methods to inform participants about the dementia study; (3) increased opportunities to share knowledge and study outcomes; and (4) adaptations to the study protocol through co-production.Conclusions: Introducing PPI for dementia research in LMIC settings, using a range of activity types is important for meaningful and impactful dementia research. To our knowledge, this is the first example of PPI for dementia research in South Asia.

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Involving minority ethnic communities and diverse experts by experience in dementia research: The Caregiving HOPE Study

Dementia ◽

10.1177/1471301218789558 ◽

2018 ◽

Vol 17 (8) ◽

pp. 990-1000 ◽

Cited By ~ 6

Author(s):

Sahdia Parveen ◽

Sandra Barker ◽

Ripaljeet Kaur ◽

Fionnuala Kerry ◽

Wendy Mitchell ◽

...

Keyword(s):

Public Involvement ◽

Positive Impact ◽

National Level ◽

Culturally Sensitive ◽

Patient And Public Involvement ◽

Ethnic Communities ◽

Successful Recruitment ◽

Dementia Research ◽

Meaningful Relationships ◽

Minority Ethnic

Patient and public involvement is imperative to ensure relevance of research. There is a growing literature on the theoretical underpinning on patient and public involvement including level and processes of involvement. The aim of this paper is to describe a person-centred and culturally sensitive approach to working with minority ethnic communities, involving carers, people living with dementia, members of the public and carer support workers, as used in the Caregiving HOPE study; and the influence of the approach on the study’s research processes and outcomes. Patient and public involvement members were considered experts by experience and involved with study conception, design, conduct and dissemination. The perspective of the experts by experience is also presented in this article. The level and nature of involvement was influenced by each individual’s needs and desires which changed over the course of the study. The approach had a significant impact on study outcomes as evidenced by successful recruitment and engagement at a national level, but was not without challenges with greater flexibility required and fuller consideration of financial and time costs required. Benefits of the approach included strong engagement, improved outcomes (successful recruitment of seldom heard groups) and meaningful relationships between researchers and experts by experience. A person-centred and culturally sensitive approach is required with patient and public involvement to ensure involvement is not detrimental to those involved, is meaningful and enjoyable and has a positive impact on the research.

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Using Patient and Public Involvement to elicit opinion on Gamified Cognitive Training and Assessment for People living with Dementia (Preprint)

10.2196/preprints.32489 ◽

2021 ◽

Author(s):

Kyle Harrington ◽

Michael P Craven ◽

Max L Wilson ◽

Aleksandra Landowska

Keyword(s):

Cognitive Training ◽

Public Involvement ◽

A Priori ◽

Patient And Public Involvement ◽

Meaningful Improvement ◽

Team Members ◽

Group Activities ◽

Community Activities ◽

Dementia Research ◽

Local Involvement

UNSTRUCTURED This paper reports on a series of Patient and Public Involvement (PPI) workshops with people living with dementia and carers where they discussed cognitive training and screening technologies designed to reduce the risk of dementia and identify changes in cognition. Little is known about the factors influencing the acceptance of such technologies. Four linked workshops were conducted with the same group, each focusing on a specific topic: meaningful improvement, learning and motivation, trust in digital diagnosis and barriers to technology adoption. Participants in the workshops included local Involvement Team members as well as those recruited via Join Dementia Research and researcher took part in some activities. The group activities were recorded, and transcripts were analyzed using thematic analysis with a combination of a priori and data-driven themes. Several important findings emerged, including the importance the group placed on maintaining good cognitive health, the importance of community activities within dementia and self-care and need for more support after a dementia diagnosis. The implications for researchers and technology developers are discussed. INTERNATIONAL REGISTERED REPORT RR2-10.1007/978-3-030-49065-2_4

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Exploring Difference or Just Watching the Experts at Work? Interrogating Patient and Public Involvement (PPI) in a Cancer Research Setting Using the Work of Jurgen Habermas

Sociology ◽

10.1177/0038038517749781 ◽

2018 ◽

Vol 52 (6) ◽

pp. 1200-1216 ◽

Cited By ~ 4

Author(s):

Paul Bissell ◽

Jill Thompson ◽

Barry Gibson

Keyword(s):

Social Sciences ◽

Cancer Research ◽

Health Research ◽

Public Involvement ◽

Patient And Public Involvement ◽

Jürgen Habermas ◽

Research Setting ◽

Health Research System ◽

Jurgen Habermas ◽

Ethnographic Data

Patient and public involvement (PPI) has emerged as a key consideration for organisations delivering health research and has spawned a burgeoning literature in the health and social sciences. The literature makes clear that PPI in health research encompasses a heterogeneous set of practices with levels of participation and involvement ranging from relatively minimal contributions to research processes to actively driving the research agenda. In this article, we draw on the work of Jurgen Habermas to explore the ways in which PPI was accomplished in a cancer research setting in England. Drawing on ethnographic data with PPI participants and professional researchers, we describe the ways in which the life-world experiences of PPI participants were shaped by the health research system. We argue that PPI in this setting is less about exploring differences with regard to a plurality of expertise and more about simply watching or supporting the professional researchers at work.

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Patient and public involvement in dementia research in the European Union: a scoping review

BMC Geriatrics ◽

10.1186/s12877-019-1217-9 ◽

2019 ◽

Vol 19 (1) ◽

Cited By ~ 6

Author(s):

Jahanara Miah ◽

Piers Dawes ◽

Steven Edwards ◽

Iracema Leroi ◽

Bella Starling ◽

...

Keyword(s):

European Union ◽

Scoping Review ◽

Public Involvement ◽

Patient And Public Involvement ◽

The European Union ◽

Dementia Research

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Planning and enabling meaningful patient and public involvement in dementia research

Current Opinion in Psychiatry ◽

10.1097/yco.0000000000000548 ◽

2019 ◽

Vol 32 (6) ◽

pp. 557-562 ◽

Cited By ~ 2

Author(s):

Alexandra Burton ◽

Margaret Ogden ◽

Claudia Cooper

Keyword(s):

Public Involvement ◽

Patient And Public Involvement ◽

Dementia Research

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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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