scholarly journals Patient and Public Involvement in Identifying Dementia Research Priorities

2018 ◽  
Vol 66 (8) ◽  
pp. 1608-1612 ◽  
Author(s):  
Jennifer Bethell ◽  
Dorothy Pringle ◽  
Larry W. Chambers ◽  
Carole Cohen ◽  
Elana Commisso ◽  
...  
Keyword(s):  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Dementia Research

scholarly journals Broadening diversity through creative involvement to identify research priorities

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
South Asian ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Condition ◽  
Physical And Mental Health ◽  
People With Dementia ◽  
Research Prioritisation ◽  
Condition C

Abstract Background Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We tried using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods We contacted existing groups and organisations to reach people not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with a mental and physical health condition, c) of South Asian heritage. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss these pieces of art and the processes involved in their generation. Results From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) information needs and anxiety/guilt around accessing care for people with physical and mental health conditions, c) supporting discussion of women’s health issues in South Asian communities. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork helped them to feel that their voice had been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and producing a study. Conclusions We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future PPI, building on what we have learnt from the project described in this paper.

scholarly journals Broadening Diversity Through Creative Engagement in Research Prioritisation

2020 ◽  
Author(s):  
Stephanie Tierney ◽  
Shoba Dawson ◽  
Anne-Marie Boylan ◽  
Gillian Richards ◽  
Sophie Park ◽  
...  
Keyword(s):  
Mental Health ◽  
Information Needs ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Health Conditions ◽  
Physical And Mental Health ◽  
Mental Health Conditions ◽  
People With Dementia ◽  
Research Prioritisation

Abstract Background: Patient and public involvement (PPI) can help with steering and shaping research prioritisation and execution. However, some groups of people may not be encouraged to take part and their voices may be seldom listened to in the production of research. This is important to consider because they may have poorer healthcare experiences. We wanted to try out using art as a vehicle for including individuals not necessarily invited to be part of research priority setting. Methods: We contacted existing groups and organisations to reach people who are not routinely supported to be part of PPI. We targeted individuals: a) with dementia, b) with mental health conditions, and c) from Black, Asian and Minority Ethnic backgrounds. We ran a workshop with each group at which individuals shared their experiences of healthcare. A young amateur artist also attended, who produced a piece of artwork afterwards that reflected the research priorities raised. We held a Twitter chat to discuss the final pieces of art that were created, and the processes involved in their generation.Results: From each workshop, we produced a list of research priorities. These included: a) improving coordination of care for people with dementia, b) supporting discussion of women’s health issues in South Asian communities, c) information needs, anxiety/guilt around accessing care and costs associated with this for people with a mixture of physical and mental health conditions. These priorities were reflected in three pieces of art, which can be viewed online. Feedback from those at workshops suggested that the artwork has helped them to feel their voice has been heard and triggered their interest in how research is developed. Those involved in the Twitter chat commented that art was one means through which researchers could connect with a range of groups in a PPI context when preparing and then producing a study. Conclusions: We found the medium of art to be an effective way of including a range of people in research prioritisation setting. This approach could be useful for future public involvement and engagement, building on what we have learnt from the project described in this paper.

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

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.

scholarly journals Impact of involving people with dementia and their care partners in research: a qualitative study

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e039321
Author(s):  
Jahanara Miah ◽  
Suzanne Parsons ◽  
Karina Lovell ◽  
Bella Starling ◽  
Iracema Leroi ◽  
...  
Keyword(s):  
Public Involvement ◽  
Qualitative Interviews ◽  
Research Programme ◽  
Patient And Public Involvement ◽  
Substantial Impact ◽  
People With Dementia ◽  
Care Partners ◽  
Dementia Research ◽  
Research User ◽  
The Impact

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.

scholarly journals Participatory Research: A Priority Setting Partnership for Chronic Musculoskeletal Pain in Denmark

2021 ◽  
Author(s):  
Kristian Damgaard Lyng ◽  
Jesper Bie Larsen ◽  
Kathryn Birnie ◽  
Jennifer Stinson ◽  
Morten Sebastian Hoegh ◽  
...  
Keyword(s):  
Musculoskeletal Pain ◽  
Priority Setting ◽  
Public Involvement ◽  
Research Priorities ◽  
Patient And Public Involvement ◽  
Chronic Musculoskeletal Pain ◽  
Pain Patient ◽  
Specific Research ◽  
Research Questions ◽  
Priority Setting Partnership

Background Patient and stakeholder engagements in research have increasingly gained attention in healthcare and healthcare-related research. A common and rigorous approach to establish research priorities based on input from people and stakeholders is the James Lind Alliance Priority Setting Partnership (JLA-PSP). The aim of this study was to establish research priorities for chronic musculoskeletal (MSK) pain by engaging with humans living with chronic MSK pain, relatives to humans living with chronic MSK pain, healthcare professionals (HCP), and researchers working with chronic MSK pain. Methods This JLA-PSP included a nation-wide survey in Denmark, an interim prioritisation, and an online consensus building workshop. The information gained from this was the basis for developing the final list of specific research priorities within chronic MSK pain. Results In the initial survey, 1010 respondents (91% people living with chronic MSK pain/relatives, 9% HCPs/researchers) submitted 3121 potential questions. These were summarised into 19 main themes and 36 sub-themes. In the interim prioritisation exercise, 51% people living with pain/relatives and 49% HCPs/researchers reduced the list to 33 research questions prior to the final priority setting workshop. 23 participants attended the online workshop (12 people/relatives, 10 HCPs, and 1 researcher) who reached consensus for the most important research priorities after two rounds of discussion of each question. Conclusion This study identified several specific research questions generated by people living with chronic MSK pain, relatives, HCPs, and researchers. The stakeholders proposed prioritization of the healthcare system's ability to support patients, focus on developing coherent pathways between sectors and education for both patients and HCP. These research questions can form the basis for future studies, funders, and be used to align research with end-users priorities Keywords Chronic musculoskeletal pain, patient and public involvement, research priorities

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

Dementia ◽  
2018 ◽  
Vol 17 (8) ◽  
pp. 990-1000 ◽  
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.

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

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

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

2019 ◽  
Vol 19 (1) ◽  
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

scholarly journals Volunteer engagement to inform research on cardiovascular health awareness, Canada

2020 ◽  
Vol 35 (6) ◽  
pp. 1570-1576 ◽  
Author(s):  
Marie-Thérèse Lussier ◽  
Janusz Kaczorowski ◽  
Magali Girard ◽  
Emmanuelle Arpin
Keyword(s):  
Data Collection ◽  
Public Involvement ◽  
Cardiovascular Health ◽  
Research Priorities ◽  
Research Process ◽  
Patient And Public Involvement ◽  
Valuable Insight ◽  
Patient Needs ◽  
Research Protocol ◽  
Health Awareness

Abstract Volunteers have been extensively used in health promotion programmes. However, they have been less frequently involved in the research process. In its most recent iterations, the Cardiovascular Health Awareness Program (CHAP) integrated volunteers (i) to facilitate CHAP sessions with participating patients for data collection and (ii) to evaluate the intervention. Drawing on the patient and public involvement literature, our research team included volunteers in the data collection and evaluation of CHAP sessions as part of the programme’s implementation in the province of Quebec (Canada). We sought volunteers’ formal feedback through individual online and phone interviews and through focus groups for each of the four projects conducted in Quebec. We found that volunteers provide valuable insight on the research protocol as well as patient needs. Their feedback led to several modifications to the research protocol and procedures of subsequent CHAP sessions. Changes included involving volunteers at earlier stages of the research process, adding more learning modules and practice sessions during the volunteer training and defining research priorities according to patient needs. Our methodology of engaging volunteers in the research process was useful to gain important and unique insight on patient needs and for future programme planning to modify the research process.

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