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 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 Patient and public involvement in research: from tokenistic box ticking to valued team members

BMC Medicine ◽  
2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Tracy Jackson ◽  
Hilary Pinnock ◽  
Su May Liew ◽  
Elsie Horne ◽  
Elisabeth Ehrlich ◽  
...  
Keyword(s):  
Public Involvement ◽  
Patient And Public Involvement ◽  
Team Members

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 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.

scholarly journals Challenges of developing, conducting, analysing and reporting a COVID-19 study as the COVID-19 pandemic unfolds: an online co-autoethnographic study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e048788
Author(s):  
Roshan das Nair ◽  
Rachael Hunter ◽  
Afagh Garjani ◽  
Rod M Middleton ◽  
Katherine A Tuite-Dalton ◽  
...  
Keyword(s):  
Research Team ◽  
Public Involvement ◽  
Patient And Public Involvement ◽  
Sampling Frame ◽  
Team Members ◽  
Face To Face ◽  
Team Working ◽  
Unique Experience ◽  
Managing Stress ◽  
Multicentre Research

ObjectivesTo capture the complexities and unique experience of a newly formed multidisciplinary and multicentre research team developing and deploying a COVID-19 study and to identify lessons learnt.DesignCo-autoethnographic study.SettingStaff at two UK academic institutions, a national charity and two major UK hospitals.ParticipantsResearchers, clinicians, academics, statisticians and analysts, patient and public involvement representatives and national charity.MethodsThe sampling frame was any content discussed or shared between research team members (emails, meeting minutes, etc), standard observational dimensions and reflective interviews with team members. Data were thematically analysed.ResultsData from 34 meetings and >50 emails between 17 March and 5 August 2020 were analysed. The analysis yielded seven themes with ‘Managing our stress’ as an overarching theme.ConclusionsMutual respect, flexibility and genuine belief that team members are doing the best they can under the circumstances are essential for completing a time-consuming study, requiring a rapid response during a pandemic. Acknowledging and managing stress and a shared purpose can moderate many barriers, such as the lack of face-to-face interactions, leading to effective team working.

scholarly journals 52 Involvement of People with Dementia and Caregivers in Irish Dementia Research: Experiences, Challenges and Opportunities

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii17-iii65
Author(s):  
Laura O Philbin ◽  
Kevin Quaid
Keyword(s):  
Capacity Building ◽  
Public Involvement ◽  
Lessons Learned ◽  
Team Members ◽  
People With Dementia ◽  
Development Capacity ◽  
Challenges And Opportunities ◽  
Dementia Research ◽  
The Right ◽  
The Impact

Abstract Background People with dementia and caregivers of people with dementia have the right to inclusion and involvement in research that pertains to them. They can bring unique insights that add significant value to research. Person/Patient Public Involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities, planning and managing research studies, as well as in disseminating findings and putting results into practice. In line with Alzheimer Europe’s position, a dementia charity is working hard to support and build capacity for PPI in Irish dementia research. Methods The Dementia Research Advisory Team was established in April 2019 and is supported by the charity. It is a group of Experts by Experience (5 caregivers and 5 people living with dementia) who influence, advise and work with researchers across Ireland in a PPI capacity. Team members collectively developed terms of reference detailing their expectations of researchers, the charity, and their role in all PPI activities. Team members will focus on becoming active stakeholders in Irish dementia research, and the charity will support them to build their capacity to be involved through capacity-building workshops and continuous evaluation. Results This joint presentation will discuss the development, capacity building, and experiences of the Dementia Research Advisory Team. A person with dementia, will discuss the progress of the team and report on members’ experiences of being involved in Irish dementia research. They will also discuss the impact of involvement on team members, and on the research they have been involved in. Practical ‘lessons learned’ on what did and did not work well will be presented, in addition to how the Dementia Research Advisory Team has navigated challenges and opportunities for involvement of people living with dementia and caregivers in research. Conclusion Members of the Dementia Research Advisory Team represent key stakeholders in Irish dementia research.

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
Sign in / Sign up

Export Citation Format

Share Document