“End users surprise you in a way that provides insight.”

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

Funders such as NWO, ZonMw, and Alzheimer Nederland encourage dementia researchers to involve end-users in their projects—the people who will need to work with the results or for whom the results are relevant. Depending on the type of research, these might be people with dementia (and their loved ones), but also policymakers, general practitioners, care or welfare professionals, technology developers, or vocational educators.

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

Connect different worlds

Regardless of the format you choose, you really need to involve end-users at an early stage, emphasizes Marlon Douwes-Smeitink. She is a member of the ABOARD end-user committee (EUC). “If you are developing a test for general practitioners, you need their perspective from the very moment you plan to set it up. That is how you truly connect different worlds.”

The ABOARD EUC has ten members: people with lived experience (informal caregivers), a specialist in elderly care medicine, a general practitioner, a municipal policy officer, an innovation strategy consultant, and an expert in public-private partnerships regarding care technology.

Broadening perspectives

This diversity broadens the researchers’ perspectives. Douwes-Smeitink: “In one of the cases, both a specialist in elderly care and someone with lived experience provided feedback. It became clear that their needs and interests differed. That proved to be a valuable insight.”

End-users can provide input on the design or execution of your research, participant recruitment, the information materials you use, and the translation and application of your results. “Researchers make all kinds of assumptions, whether consciously or not,” notes Marlon Douwes-Smeitink. “As an end-user, you can correct any unfounded assumptions.”

Even in fundamental research

She advocates involving end-users in every dementia research project—and yes, that includes fundamental research. “While you might not be exchanging ideas on the technical content in the same way, other aspects come into play,” says Douwes-Smeitink. “End-users ask different questions than fellow researchers do. That can offer surprising insights. Plus, you have to tailor 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 instance, you could discuss your research annually with a hospital’s patient council.”

Douwes-Smeitink previously conducted research herself, currently works as a program manager for the Central Brabant Brain Injury Network (‘Hersenletselnetwerk Midden-Brabant’), and has family members with dementia (her grandmother and mother). She has been closely involved with the ABOARD-EUC for years. “If you have to go through something so difficult, it’s good to be able to use that experience to contribute to something positive.”

Twice a year

The ABOARD EUC—of which Douwes-Smeitink is a member—sounds like an intensive commitment. “But it’s actually not bad at all.” The EGC meets twice a year. During these meetings, the committee discusses questions or dilemmas raised by researchers, having received background information beforehand to prepare. “You can bring the most important feedback to light in just one such conversation. Sometimes researchers want to talk further after the meeting, in which case they arrange another session with me or other EUC members.”

PhD candidate Daphne Nijland did something similar. Representing Alzheimer Center Amsterdam (the GeneMINDS project), she is setting up the ‘PRSimulatie’ study alongside Sven van der Lee and Jetske van der Schaar. “It is possible to derive a dementia risk score for people with suspected dementia based on their DNA. What we want to find out is: do they want that? Can they properly interpret the information, and do they act on it—for instance, by adopting a healthier lifestyle to lower their risk?”

To obtain realistic answers to these questions, Nijland plans to show volunteers (selected from participants of hersenonderzoek.nl) a video as part of a scenario-based study. The video simulates a consultation where risk score results are discussed: a doctor delivers the results, and the setting creates the impression that both the doctor and the viewer are in the consultation room. A questionnaire follows. “To get quality data, the video and the information provided have to be spot-on.”

Valuable

Early in the design phase, Van der Schaar put the PhD candidate in touch with several members of the ABOARD End-User Committee, including Marlon Douwes-Smeitink. Nijland discussed the study design and the best way to introduce the project with them, and showed them images that might be used in the video. Later, at an EUG meeting, she asked for feedback on what she had ultimately developed. “That was very valuable.”

The visuals Nijland intended to use during the simulated consultation to explain risk scores needed simplification. She also received tips on how to phrase information more clearly. Nijland: “To me, all the terms are self-evident; I don’t know what the participants don’t know. People with lived experience, like Marlon, do.”

Good timing

Douwes-Smeitink: “Daphne’s timing was excellent: she reached out while the study was still being designed. It is also crucial in such encounters that researchers and their supervisors or PIs are open to making adjustments. That was certainly the case here. If you are already further along in the implementation phase, it is often simply more difficult.”

PhD candidate Yara Meijer (Vrije Universiteit) experienced this firsthand. Together with Brenda Baak, she is assessing whether differences in dementia diagnostic pathways can be categorized. She does this by selecting and analyzing data on visits to general practitioners and hospitals. Initial findings showed that most people go through a relatively short process, with little time elapsing between the first doctor’s visit regarding dementia-related symptoms and the actual diagnosis. This did not align with existing knowledge on the subject. She subsequently presented this to the ABOARD end-user committee.

Interpreting unexpected results

Douwes-Smeitink: “Yara and Brenda couldn’t interpret the unexpected result. The end-user committee, however, didn’t find the result strange at all.” For various reasons, symptoms are only recorded as ‘dementia-related’ in a patient’s file once there is already a strong suspicion of dementia; by that point, the patient is often well into the course of their symptoms. “The initial data selection criteria—’dementia-related symptoms’—therefore provided a distorted picture. We were able to explain how and why this happens 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 analyze all GP and hospital visits in the data from the three years prior to diagnosis and look for relevant patterns from that angle.

Increasing relevance

Involving end-users is no panacea for implementing your results, Smeitink emphasizes. “But through interaction with end-users, you are more likely to make choices that increase the relevance of your research.”

Inspiring colleagues

A prerequisite, however, is that your supervisor or PI is open to adjustments based on end-user input. If that is not the case, things are more difficult for PhD candidates, Douwes-Smeitink acknowledges: “Even so, you can still make a difference. You can take the initiative to speak with end-users and leave the actual implementation to a successor. You can also quite 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 bring your colleagues along.”