This blog is a powerful reflection from a FRIEND Network member on how people living with Huntington’s disease can turn lived experience into action when working with researchers and policymakers.
People with Huntington’s disease (HD) can often feel a sense of hopelessness as they are repeatedly reminded that the condition which they live with is incurable and untreatable. Getting a positive result for the gene can seem like the end of the world for some. However, with time and the right support, people living with HD discover that they are not totally powerless over the disease. Many choose to enrol in research studies and clinical trials, others work hard to fundraise for charity or their communities, some will bravely talk to the media and use their experience to ensure the public know about HD. I decided to use my academic background alongside my lived experience of being HD gene positive to ensure that the research that is conducted into HD is relevant, feasible, ethical, and impactful.
I first heard of the Dementia and Neurodegeneration Policy Research Unit (DeNPRU Exeter) through my work with HD Voice – a volunteer lived experience panel for the Huntington’s Disease Association. It is through volunteering and immersing myself into the HD community that I built up the confidence to talk to researchers about their work. Being part of DeNPRU Exeter means that I can contribute to shaping the policy that affects people living with dementia and neurodegenerative conditions through research. All (good) policy decisions should be based on robust, up-to-date evidence, and policymakers should carefully consider the impact of these decisions on the intended population. This cannot be achieved without placing lived experience at the heart of policymaking, including in the research that underpins it.
People with lived experience can influence policy research in many practical ways, for example:
- Actively contributing to consultation and co-production within the research team
- Co-authoring practical guides for researchers and others on involving people with lived experience in research, such as “What Works When Working Together”
- Contextualising research findings for real life applications
- Improving accessibility and dissemination of outputs
We can also use our unique insight to advise researchers on ethical issues surrounding their research. For example, researchers focusing on prevention of dementia and neurodegeneration should be aware that the term ‘prevention’ doesn’t make a lot of sense in conditions that have a high degree of inheritability (like HD). In the past, ‘prevention’ of HD has been associated with the eugenics movement. Researchers and policymakers should be mindful of such historic contexts (Miller & Levine, 2013) pertinent to their research topic before they attempt to incorporate it into policy or research evidence.
The only qualifier for contributing to policy research in this way is that you have gained insight and knowledge from experiencing dementia or neurodegenerative conditions, or through caring for someone experiencing it, and you wish to use that knowledge to make lives better. It doesn’t matter how much you are able to contribute – just do what you can with what you have.
I hope to continue contributing and to do even more for DeNPRU Exeter in its next year of funding (opportunities and life circumstances permitting). My advice to anyone thinking about using their lived experience to help shape research, is to take the plunge and do it. Your unique insight can make the world of difference to how research is conducted and how impactful it will eventually be for those who are meant to benefit from it.
By anonymous FRIEND Network member.
A huge thank you to the author of this post for sharing their personal experience of involvement.
Miller, P., Levine, R. (2013) Avoiding genetic genocide: understanding good intentions and eugenics in the complex dialogue between the medical and disability communities. Genetic Medicine, 15, 95–102. https://doi.org/10.1038/gim.2012.102
