Dementia Priority Setting Partnership with the James Lind Alliance: using Patient and Public Involvement and the Evidence Base to Inform the Research Agenda

Kelly et al. (2015) full text summary PDF

For which topic were research priorities identified?

dementia

In which location was the research priority setting conducted?

Europe - United Kingdom

Why was it conducted at all?

The number of people living with dementia in the UK and worldwide is high, estimated at 800,000 people in the UK and 44 million people worldwide.With an ageing population, these figures are predicted to increase in the UK to over a million people by 2021 and worldwide to 135 million by 2050, despite recent estimates that future prevalence and anticipated steep trajectory will be less profound. The economic and societal impact of dementia places demands on health, social care and community services as well as family carers. Recently, there has been acknowledgement of the need for governments to address dementia as a ‘public and health priority' and a call for national and international coordination. To maximise resources, there is a need to identify and prioritise unanswered questions (‘uncertainties') about prevention, diagnosis, treatment and care relating to dementia from a wide societal perspective; one that integrates the views of all stakeholders.

What was the objective?

to involve patients/service users, carers, and health and care professionals in identifying and prioritizing the top 10 ‘uncertainties' (unanswered questions) for research based on a rigorous, transparent and independent process

What was the outcome?

a ranking list of 10 research questions

How long did the research prioritization take?

April 2012 - June 2013

Which methods were used to identify research priorities?

JLA method

How were the priorities for research identified exactly?

Step 1: setting up PSP: steering group established, stakeholders and partner organizations identified. Step 2: collecting research uncertainties: via survey and literature review, additionally uncertainties from previous small-scale, in-house priority setting exercise included and UK DUET searched, 4116 raw submissions via survey, 85 submissions added based on literature review. Step 3: data processing: responses collated, themes identified, duplicate questions combined, resulting in 433 questions, questions that only one or two people asked were excluded, resulting in 272 questions, further merging and combining to reach 150 questions, check against evidence. Step 4: interim ranking: list of 146 questions, partner organizations asked to rank their top 10 questions, rankings from different stakeholders combined, top 25 moved forward. Step 5: final prioritization: workshop: list of 25 questions sent out to participants before workshop and participants were asked to rank questions before attending the workshop, small group discussions with nominal group technique, small group rankings

Which stakeholders took part?

Patients/service users, carers, and health and care professionals. Survey: 1563 participants: 64 people with dementia, 1188 family carers/relatives, 224 health and care professionals (carers, geriatricians, GPs, nurses, physiotherapists, occupational therapists, social workers). Interim ranking: 61 organizations representing the views of people with dementia and their carers, and health and social care practitioners. Workshop: 18 participants: 6 clinicians, 5 had a nursing and/or nursing management and/or professional care background, 5 family carers or former carers of people with dementia, and 2 people with dementia.

How were stakeholders recruited?

Potential partner organizations were identified through the networks of the Alzheimer's Society and the steering group, ensuring representation from all stakeholder. The survey was available on the Alzheimer's Society website from April to July 2012 and distributed through the Alzheimer's Society monthly magazine, local offices, Research Network volunteers, GP steering group, Facebook and Twitter pages and social media launches. It was also distributed through the PSP partner organizations, clinical, health and social care professional bodies, and internal and external contacts of the steering group (via meetings, conferences, emails, newsletters, bulletins, web and social media).

Were stakeholders actively involved or did they just participate?

Stakeholders not only participated but were also actively involved in the research prioritization process: They were part of a steering group. The steering group consisted of 14 members. The members were actively engaged in the process, defined the scope of the project and agreed on a protocol, and were involved in data processing.