Late last year, dementia overtook heart disease to become the leading cause of death in England and Wales. The immense impact of dementia on the lives of families and the challenge of providing adequate health and social care for patients makes it essential that dementia research connects to the needs of those it seeks to help. Here, postdoctoral researcher Clarissa Giebel argues that public involvement in dementia research is a piece of the puzzle that is often overlooked, but of vital importance.
- Dementia research often neglects to involve patients and their families
- Public involvement in research brings substantial benefits to the quality and funding of research
- Like ethical approval provisions, research projects in dementia should demonstrate a measurable commitment to public involvement from the outset
Surely no one would disagree with the statement that ‘Researchers ‘do’ dementia research to help those people living with the condition, and their carers’. That includes social aspects of well-being, clinical research to find treatments, to exploring the biological markers of the disease. What research studies can neglect at times however is directly asking people with dementia, and their family carers, whether a certain study really addresses the needs and wishes of those affected. Whilst we know where there are certain knowledge gaps that need to be filled to get a clearer picture of how we can improve dementia care, maybe some of these gaps might be less important to patients and carers.
Not just ‘for’ the public, but ‘with’ the public
The philosophy behind public involvement is that research is conducted with or by members of the public, and not for them. Public involvement is growing substantially in research and is considered good practice. In the UK, there are guidelines provided by the National Institute for Health Research of what good public involvement should entail (.pdf). With a total of six values, the wishes and experiences of people with dementia and their carers should be respected, by being involved as key partners in research, such as being a co-author. Second, participants should be supported to ensure they can flexibly take part in any meetings. Third, it is important to be transparent both as researchers about the expectations of involvement; and as members of the public about the extent to which people wish to participate. Fourth, the opinions shared by members of the public should be responded to. Fifth, there needs to be fairness of opportunity, by allowing people with different abilities, or physical or sensory limitations, to take part. The last value is accountability, showing the members of the public how their input has shaped the research.
Often, research takes place in more than just one location. Participants can be recruited from several sites across a country, or also from a multitude of countries. Just like in research, allowing people from a variety of geographical locations to share their valuable opinions on a research study can have many benefits. People have different experiences of care services or care homes for example. For this reason, public involvement can take different shapes to be as inclusive as possible. Some public involvement involves face-to-face meetings, where members for example provide feedback on study leaflets or the structure of a study. Meeting face-to-face has the benefits of peer support. Involving members of the public can also take place virtually, that is, via emails or online fora or via postal mail out.
With increasing frequency, applying for funding in the UK involves having consulted the public about the proposed research. It is part of the policy of some funding bodies to address the public to find support for, or faults in, the proposed research. But not only at the grant stage, also the research itself should strongly be guided by public involvement to ensure that the funded research is conducted to the needs and wishes of those affected.
Creative, connected research – the benefits of public involvement
Particularly for those researchers who primarily do not collect data and see patients and carers as part of the daily research job, getting involved in public involvement helps connect the digits and test scores with the people behind the data. Public involvement is creative, and allows researchers to think differently about research and hopefully add those angles that people living with the condition, and those that care for a loved one, really want to see answered.
Whilst public involvement is more frequently reported on in published research, most of this research comes from the UK. This begs the question how other countries involve people with dementia, or other populations, in research. Considering the sheer benefits of public involvement, it should become a policy for researchers to engage in public involvement.
To do this, just like dementia studies require ethical approval before commencing, an organisation such as INVOLVE should be in charge of ensuring that every study has in some aspects consulted the public. If there are policies to ensure that a study is ethical, why are there no policies to ensure that a study truly captures the needs of those affected?