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

Abstract

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.

SENSE-Cog Asia: A Feasibility Study of a Hearing Intervention to Improve Outcomes in People With Dementia

“…Additionally, part of phase one involved recruiting a PPI group in several study sites. This work reported elsewhere ( 17 ), was a key element in supporting the cultural and contextual adaptation of the intervention, which was initially developed in Europe for EU settings, which are markedly different to Pakistan and other South Asian settings. The experience of PPI was also unique, since PPI is not well-known nor practiced beyond certain HIC (mostly English-speaking) countries and, moreover, we involved people with dementia and their caregivers.…”

“…Additionally, in Phase 1, we developed a network of patient and public involvement (PPI) groups to inform the work and support adaptation of the intervention. The PPI work, which resulted in a network of people with dementia and their families ( SENSE-Cog Asia Research Advisory Team) , involved a variety of public engagement activities reflecting different parts of the Wellcome Trust's “Public Engagement Onion” ( 17 ). Each site reported PPI outcomes, including changing attitudes and behavior to dementia and research involvement, best methods to inform participants about the dementia study, sharing knowledge and outcomes, and co-adapting the dementia study protocol to the local context.…”

Mapping the role of patient and public involvement during the different stages of healthcare innovation: A scoping review

“…The exclusion of wider terms may go some way towards explaining why the vast majority of the papers found took place in high‐income countries. PPI is a particularly western concept and activity and is not well used in low‐ and middle‐income countries 117 . Wider search terms may have yielded more geographically varied studies; however, as Miah et al 117 point out, the premise of PPI itself is western in nature and can be challenging to implement in countries where professional and patient relationships are structured hierarchically.…”

“…PPI is a particularly western concept and activity and is not well used in low-and middle-income countries. 117 Wider search terms may have yielded more geographically varied studies; however, as Miah et al 117 point out, the premise of PPI itself is western in nature and can be challenging to implement in countries where professional and patient relationships are structured hierarchically. Second, our exclusion criteria limit the scope of findings in our review.…”

Patient priority setting in HIV ageing research: exploring the feasibility of community engagement and involvement in Tanzania

“…In international collaborations involving low and middle-income country (LMIC) populations and high-income country (HIC) researchers, three key theoretical imperatives of PPI/CEI are considered crucial, and are relevant to the context of this work. These are the emancipatory imperative, aiming to address power imbalances between vulnerable populations and researchers; the efficiency imperative, aiming to focus scarce research resources on questions prioritised by the population; and the political imperative, aiming to co-create knowledge between researchers and lay stakeholders [ 23 , 24 ].…”