Involving people with dementia in research – lessons from ROADMAPs Outcome Definition team 25 Sep 2018

Today’s post is by Mia Nelson from the Usher Institute of Population Health Sciences and Informatics (University of Edinburgh, UK).

There is an increasing awareness in health-related research across Europe of the benefit of involving patients and the public as active partners in the research process, with research done with and by patients or the public, rather than to, for or about them. Over the last year, researchers from the University of Edinburgh, in collaboration with Alzheimer Europe (AE), conducted a range of Patient and Public Involvement (PPI) consultations for the work package on Outcome Definition (WP2) of the ROADMAP project, with the key PPI activities undertaken with the European Working Group of People with Dementia (EWGPWD).

The primary consultation took place over the course of two consecutive days using a series of discussion group activities.  We found that engagement with the group was enhanced through a few preparatory measures.

  • Having a clear introduction to the topic of interest, written without jargon and giving a detailed lay explanation of the issue.
  • Being concise about what is wanted from the group and from their involvement in the project.
  • Providing these details in writing in advance: at least a couple of weeks in advance of the activity.
  • Providing written information in an accessible format: we followed the Dementia Engagement and Empowerment Project (DEEP) guidelines.

A few further considerations also proved useful during the consultation activities.

  • Explaining the topic of interest again and giving time to answer questions or explain the issue in further detail as required.
  • Time limiting the activities and taking adequate breaks between each consultation activity.
  • Ensuring people talk one at a time and avoiding individuals talking over each other.
  • Allowing time (gaps in the conversations) for the members to reflect on and add to the discussion when they are ready.

While these considerations prove beneficial in any consultation or discussion group activity, they were particularly helpful given the impact AD and dementia can have on an individual’s cognitive performance and sensory perception.

Following the primary consultations, WP2 remained engaged with AE and the EWGPWD.  Our interpretation and write up of the activities was provided to the group, in writing, for their comments and feedback.  This was provided, as before, in an accessible format in keeping with DEEP guidelines.  The group’s comments and advice were then incorporated into the final report.

In addition, the original researcher team returned to meet the EWGPWD face-to-face to discuss the final report and receive their feedback.  This was particularly helpful, allowing verification of the team’s interpretation of the EWGPWD’s advice and opinions and facilitating discussion of any difficult issues.

The EWGPWD, working as partners, advised WP2 which outcomes and endpoints they believed usefully identified disease progression and should therefore be available through the ROADMAP platform.  They identified wider issues that they believed were particularly pertinent to the project’s aims and to recognising disease progression in the real world in general, and advised on the design of a survey that was later distributed to key stakeholder groups across Europe.  We are grateful for the EWGPWDs involvement in the project and for the support and advice we received from AE prior to and throughout the consultation process.

The full reports on the lists of priority real-world evidence outcomes, the disease progression matrix as well as an annex on the PPI consultations are available on the ROADMAP website.

If you are interested in knowing more about Alzheimer Europe’s position on involving people with dementia in research through PPI, you can find the peer-reviewed publication published in Aging & Mental Health here:


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