JMIR Publications

ABSTRACT

Background:

Technology-related research for people with dementia and their carers often aims to enable people to remain living at home for longer and to prevent unnecessary hospital admissions. To develop research that is person-centred, effective and ethical, patient and public involvement (PPI) is necessary, though may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care related technology, this review explores how, and with what impact, collaborations between researchers and stakeholders such as people with dementia have taken place.

Objective:

To describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.

Methods:

A scoping review of literature relating to dementia, technology and patient and public involvement was conducted using Medline, PsycINFO, EMBASE and CINAHL. Papers were screened for inclusion by two authors. Data was then extracted using a pre-designed data extraction table by the same two authors; a third author supported resolution of any conflicts at each stage. Barriers and facilitators of undertaking PPI were then examined and themed.

Results:

Thirty-one papers were included for analysis. The majority (21/31) did not make clear distinctions between activities undertaken as PPI and activities undertaken by research participants, and as such their involvement did not fit easily into the NIHR definition of PPI. Most of this mixed involvement focused on the reviewing or evaluating of technology prototypes. A range of approaches was described, most typically using focus groups or co-design workshops. Nine studies described involvement at multiple stages through the research cycle, sometimes with evidence of sharing of decision-making power. Some studies commented on barriers or facilitators to effective PPI. Challenges identified were often around issues of working with people with significant cognitive impairments, and pressures on time and resources. Most studies did not evaluate the impact of involvement. Where reported, impact was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers.

Conclusions:

Researchers often involve people with dementia and other stakeholders in technology research. At present involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers and other stakeholders can have a positive impact on the research, patient and public partners and researchers. Wider reporting of methods and facilitative strategies along with more formalised methods for recording and reporting on meaningful impact would be helpful so that all those involved – researchers, patients, and other stakeholders – can learn how together we can best conduct research.