研究

A few months ago, I was trying to find people interested in participating in my research project called Integrate-HD, and a member of the Huntington’s Disease community asked me “Will this help?”. Now, my research does not involve testing a new drug, it does not involve testing novel equipment, heck, I am not testing absolutely anything! Will my research help?!

You see, the problem I am trying to solve is the lack of care access and the lack of care coordination that people with Huntington’s Disease experience. I do not have to explain the reality of these problems to you, as you will know them better than me. I am not personally affected by HD, in fact, I only had my first patient with HD 10 years ago. But HD has been glued to me since then, and, for varied reasons, I always felt HD was treated like the underdog. My mum always told me I always pick the hardest path, and so here you find me, researching how to improve care with the HD community.

I started by looking at activities that had been tested that could improve care coordination in HD, but unfortunately there was none to be found. And so, I started designing those activities with the HD community, through research. First, I wanted to know how bad the situation was were I lived, in England (pretty bad), then I asked people what good care looked like through individual interviews and group discussions (results undergoing publication). And this short paragraph has taken 5 years of my life, even without any testing…

Now, for me, the testing is the next phase. I daydream that I can develop an effective intervention that can support people better and at no added cost, perhaps even cheaper to the government in the long run! If I manage to convince the people who take the decisions to reorganize care, perhaps, in time, my research will help people. You may have heard this, but research takes approximately 17 years from theory to practice. Good thing I am only 37 and I am prone to the hardest paths.

I have found people very disheartened with the system, exhausted by all the obstacles of life, too sick to take part in any research, or just wanting a break from HD related stuff. Participating in research can be very demanding. But, if you find the will, the time, the energy, join research: as a participant, as an advocate contributor, or by sharing a post you found interesting. I remain hopeful that together with the community, we can make a difference. Regardless of the time it takes us, we will keep pushing for better care and better treatment.

“The best time to start anything was yesterday. The 2nd best time to do it, is always today”.

You can find research opportunities, for testing interventions and/or for building knowledge, on many websites, for example 这里. You can also contact your local HD association and The International Huntington Association. 

Blog written by Sandra Bartolomeu Pires, expanding on her Instagram post  @integrate_hd dated 22nd October 2024. Sandra is a nurse researcher passionate in improving care for people living with Huntington’s Disease. She is writing her doctoral thesis and is not currently recruiting to any study.