“End users surprise you in ways that provide insight.”

Funding bodies for dementia research often require you to ‘involve end-users’ in your research project. But what does this entail, and how does it benefit dementia research? A member of the ABOARD end-user committee and two PhD students share their insights on this.

Funding bodies such as NWO, ZonMw and Alzheimer Nederland encourage dementia researchers to involve end-users in their projects: the people who will have to put the results into practice or for whom they are relevant. Depending on the type of research, these may include people with dementia (or their carers), but also policymakers, GPs, healthcare or social care professionals, technology developers or vocational training tutors.

What can be confusing is the wide variety of names and methods used to involve end-users. Sometimes it is called ‘citizen science’, at other times ‘target group participation’. And the formats range from end-user committees and focus groups to sounding board groups and co-creation teams.

Connecting worlds

Whichever approach you choose, you really must involve end-users at an early stage, emphasises Marlon Douwes-Smeitink. She is a member of ABOARD’s end-user committee (EGC). “If you’re developing a test for GPs, you need their perspective from the very moment you start planning it. That’s how you truly connect different worlds.”

ABOARD’s EGC has ten members: people with lived experience (informal carers), a geriatric specialist, a GP, a local authority policy officer, a consultant in innovation strategy, and an expert in public-private partnerships relating to healthcare technology.

Broadening the perspective

This diversity broadens the researchers’ perspective. Douwes-Smeitink: “In one of the case studies, both a geriatric specialist and an expert by experience provided feedback. It became clear that their needs and interests differed. That proved to be a valuable insight.”

End users can contribute ideas on the design or conduct of your research, on the recruitment of participants, on the information materials you use, and on the interpretation and application of your results. “Researchers make all sorts of assumptions, whether consciously or not,” explains Marlon Douwes-Smeitink, “As an end-user, you can correct any unfounded assumptions.”

This applies to fundamental research too

She advocates involving end-users in every dementia study. And yes, that includes fundamental research too. “Discussing the content in detail is less of a priority in such cases, but something else is,” according to Douwes-Smeitink. “End-users ask different questions to fellow researchers. That can surprise you in a way that provides insight. And you have to adapt your language to laypeople. That alone forces you to think about your own research in a different way.” And it doesn’t have to be complicated. “For example, you could discuss your research annually with a hospital’s patient council.”

Douwes-Smeitink used to conduct research herself; she now works as a programme manager for the Midden-Brabant Brain Injury Network and has family members with dementia (her grandmother and mother). She has been closely involved with the ABOARD-EGC for many years. “If you have to go through something so difficult anyway, it’s nice to be able to put your experience to good use, so that it contributes to something positive.”

Twice a year

The ABOARD-EGC, of which Douwes-Smeitink is a member, sounds quite intensive. “But it’s not as bad as it sounds.” The EGC meets twice a year. During these meetings, the EGC discusses questions or dilemmas raised by researchers, on which they receive information in advance to help them prepare. “In just one such discussion, you get the most important feedback out in the open. Sometimes researchers want to talk a bit further after such a meeting. In that case, they arrange to meet up again with me or other EGC members.”

PhD candidate Daphne Nijland did something similar. Working at the Alzheimercentrum Amsterdam (GeneMINDS project), she is setting up the ‘PRSimulation’ study. She is doing this with Sven van der Lee and Jetske van der Schaar. “You can derive a dementia risk score for people suspected of having dementia, based on their DNA. What we want to find out is: do they want this? Can they properly interpret this information, and do they act on it – such as by living more healthily to reduce the risk?”

To obtain realistic answers to these questions, Nijland intends to show volunteers (selected from participants on hersenonderzoek.nl) a video as part of a scenario study. The video simulates a risk score consultation: a doctor conducts such a consultation, and the setting gives the impression that both the doctor and the viewer are sitting in the consultation room. This is followed by a questionnaire. “To obtain qualitative data, the video and the information must be of high quality.”

Valuable

Early in the design phase, Van de Schaar put the PhD candidate in touch with several members of the ABOARD end-user committee, including Marlon Douwes-Smeitink. Nijland discussed the design with them, how best to introduce the study, and presented images that might be used in the video. Later, at an ECG meeting, she sought feedback on what she had ultimately developed. “That was very valuable.”

The images Nijland wanted to use during the fictional consultation to illustrate risk scores needed to be simplified. She was also given tips on how to phrase information in a way that was easier to understand. Nijland: “To me, all the terms are self-explanatory; I don’t know what participants don’t know. People with lived experience, such as Marlon, do.”

Good timing

Douwes-Smeitink: “Daphne’s timing was spot on: right at the study’s design stage. It’s also important in such a meeting that researchers and their supervisors or PIs are open to making adjustments. And that was certainly the case. If you’re already further along in the research process, it’s often simply more difficult.”

PhD candidate Yara Meijer (Vrije Universiteit) experienced this first-hand. Together with Brenda Baak, she is investigating whether differences in dementia diagnosis pathways can be categorised. She is doing this by selecting and analysing data on visits to GPs and hospitals. The initial findings were that most people go through a relatively short pathway, with little time elapsing between their first visit to a doctor regarding dementia-related symptoms and their diagnosis. This did not align with existing knowledge on the subject. She then presented these findings to the ABOARD end-user committee.

Interpreting an unexpected outcome

Douwes-Smeitink: “Yara and Brenda were unable to interpret the unexpected outcome. The EGC did not find the result strange at all.” For various reasons, symptoms are only categorised as ‘dementia-related’ in a medical record once there is already a strong suspicion of dementia; this is often quite late in the symptom progression. “The original data selection framework, ‘dementia-related complaints’, therefore presented a distorted picture. We were able to explain how and why this works in practice.”

Yara: “That gave us a more meaningful perspective on the data. It did require a different approach, but now we can move forward again.” She is now going to analyse all visits to GPs or hospitals, using data going back up to three years before the diagnosis, and look for relevant patterns from that perspective.

Increasing relevance

Involving end-users is not a panacea for implementing your results, Smeitink emphasises. “But by interacting with end-users, you’re more likely to make choices that increase the relevance of your research.”

Inspire colleagues

One prerequisite, however, is that your supervisor or PI is open to making adjustments based on input from end-users. If that is not the case, it is more difficult for PhD students, acknowledges Douwes-Smeitink: “Even so, you can still make a difference. As the initiator, you can speak to end-users and leave the implementation to a successor. You can also easily explain to end-users that you are looking for inspiration; and that you are at the start of a process in which you are trying to get your colleagues on board.”