Trust is the starting point for inclusive brain health research
Brain health research often begins with an important question: how do we better understand dementia, ageing and cognitive decline across different communities?
But there is another question that should come first.
Who is missing from the evidence we already have?
During my Marie Skłodowska-Curie PhD fellowship at Amsterdam UMC, I collaborated with colleagues at the University of Cambridge on ComPHAD, a project exploring community and public health approaches to dementia research. The project focused on a concern that is both methodological and deeply human: many people whose lives are shaped by homelessness, migration, poverty, trauma, mental illness, caring responsibilities or social isolation are often not adequately represented in routine health data.
In brain health and dementia research, this matters.
If some lives are missing from the evidence base, they may also be missing from the services, policies and clinical assumptions built upon it.
My contribution to this work was shaped by my research on co-creation, participatory approaches and theory-informed public health methodology. I was especially interested in what happens when health research tries to engage people whose previous encounters with healthcare, welfare, housing, immigration or other public systems may have been difficult, exhausting or even harmful.
The usual language used to describe this problem is familiar. Some groups are called “hard to reach”, “seldom heard” or “difficult to engage”.
These phrases may be well intentioned, but they can hide a more important question.
Where does trust already exist and how can research begin there?
Trust is not abstract
In the ComPHAD workshops, trust was not discussed as a vague ideal. It was practical, relational and situated.
It lived in community cafés, familiar organisations, faith spaces, shared meals, trusted intermediaries and places where people were known as more than patients, participants or cases.
In Plymouth, conversations hosted through local community networks brought together people with lived experience of dementia, migration and homelessness, as well as faith leaders, community representatives and others connected to underserved communities.
The discussions highlighted communication, cultural sensitivity, dignity and trust as central to whether people felt able to engage with brain health research.
This is important because brain health is not a neutral topic.
Memory loss, cognitive testing and dementia can carry fear, stigma, shame and uncertainty. In some communities, dementia may be associated with weakness, embarrassment or loss of dignity. For others, the barriers are more immediate: transport, digital exclusion, unstable housing, language barriers, fear of services or concern about how personal information will be used.
A research invitation does not arrive in isolation.
It is interpreted through people’s prior experiences of being believed or dismissed, helped or scrutinised, respected or diminished.
When research feels like scrutiny
For clinicians and researchers, this should give us pause.
Methods that appear routine to us may not feel routine to the person being invited to take part. An interview may be intended as a respectful conversation, but may be experienced as another interrogation. A survey may be a data collection tool, but may resemble yet another eligibility form. A cognitive assessment may be scientifically necessary, but may feel like an examination in which failure carries stigma.
Even symbols of credibility can be interpreted differently. A university badge, NHS lanyard or professional title may signal legitimacy to professionals, but distance or hierarchy to someone else.
The Nottingham workshop deepened this lesson. Participants discussed healthcare access and research engagement in the context of homelessness, trauma, mental health challenges, dementia and the welfare system.
Some described fragmented care, long waits and processes that left them feeling scrutinised rather than supported. The workshop report noted that interviews, surveys and examinations could themselves be triggering, particularly for people already exhausted by repeated institutional questioning.
This does not mean that research should avoid difficult questions.
It means that the conditions under which those questions are asked matter.
Friendly places matter
One of the most powerful ideas from the Cambridge workshop was the suggestion of “friendly places” as a way of maintaining contact with people whose circumstances may change frequently.
At first, this may sound like a practical recommendation. But it is also much more than that.
It recognises that people living with instability may need research to adapt to their lives, rather than expecting their lives to fit the administrative needs of a study. For someone experiencing homelessness, insecure housing, trauma, caring responsibilities or poor mental health, a formal appointment system may not be the most realistic or humane way to stay connected.
The same workshop emphasised personalisation, transparency, community integration, social value and meaningful incentives as conditions for inclusion.
These insights suggest that trust-building is not a soft addition to rigorous research. It is part of rigour when the aim is to understand lives that routine systems fail to capture.
If participation is only feasible for people who are comfortable with institutional language, forms, appointments, professional hierarchies and repeated questioning, then the resulting evidence base will remain partial.
Inclusion has to begin before recruitment.
A more serious approach to inclusive brain health research would begin long before recruitment.
Research teams should work with trusted community organisations before protocols are fixed. Community spaces should not be treated only as access routes, but as places where knowledge, relationships and legitimacy already exist.
Funding should include time for relationship-building, fair payment, accessibility, emotional support, shared feedback and sustained communication. Methods should be co-developed so that interviews, surveys and assessments do not unintentionally reproduce forms of scrutiny that people already experience elsewhere.
Researchers should also report stakeholder engagement more honestly.
It is not enough to state that communities were consulted. We should explain what people were able to influence, what changed because of their engagement, what could not be changed and why.
Without this transparency, participation risks becoming a procedural claim rather than a substantive shift in how knowledge is produced.
What this means for care
For clinicians, the lesson is closely related.
Patients do not enter consultations as blank recipients of care. They arrive with histories of interpretation. The same question can land differently depending on who asks it, where it is asked and what the person believes may follow from their answer.
A question about memory may feel caring to one person, frightening to another and intrusive to someone else. A referral may feel supportive to one patient and risky to another. A form may be simple paperwork for a clinician, but another moment of exposure for someone used to being assessed, judged or disbelieved.
This is why trust matters. Not as a slogan, but as a condition for meaningful participation, better evidence and more humane care.
ComPHAD did not teach me that underserved communities are unreachable. It taught me that trust often already exists, but not always where research institutions first look for it.
Inclusive brain health research should therefore start not by asking why people are absent, but by asking where people already feel safe enough to be present.
About the Author:
Katrina Messiha is a Marie Skłodowska-Curie PhD Fellow at Amsterdam UMC. Her research focuses on co-creation, participatory approaches and theory-informed public health methodology. She collaborated with colleagues at the University of Cambridge on the ComPHAD project discussed in this article.
Competing interests:
Katrina Messiha is a Marie Skłodowska-Curie PhD Fellow at Amsterdam UMC and collaborated with colleagues at the University of Cambridge on the ComPHAD project discussed in this article. She has no other competing interests to declare.
Patient consent:
No identifiable patient is described in this article.
References:
ComPHAD Cambridge Workshop Report. Teamwork for Health Workshop: Exploring a Collaborative Approach to Tackle Brain Health Inequality in Ageing Underrepresented Communities. University of Cambridge, 2023.
ComPHAD Nottingham Workshop Report. Teamwork for Health Workshop: Exploring a Collaborative Approach to Tackle Brain Health Inequality in Ageing Underrepresented Communities. University of Cambridge, 2023.
ComPHAD Plymouth Workshop Report. Health is Wealth Workshop: Exploring a Collaborative Approach to Tackle Brain Health Inequality in Ageing Underrepresented Communities. University of Cambridge, 2023.
Related publication:
Messiha, K., Thomas, N., Brayne, C., Agnello, D.M., Delfmann, L.R., Giné-Garriga, M., Lippke, S. and Downey, J., 2025. Grey literature scoping review: a synthesis of the application of participatory methodologies in underrepresented groups at an elevated risk of dementia. BMC Medical Research Methodology, 25(1), p.122.
Related websites for more information about the project context:
https://www.cph.cam.ac.uk/events/comphad-special-interest-group-meeting
