In her latest post, Lou explains why patients’ views matters so much to researchers and tells us about her experiences in a research Dragons’ Den!
Things have been moving fast in my Quality of Life in PSP and MSA research project. Responding to the feedback from the PSPA patient group meeting and feedback from MSA patients, I incorporated home visits into my study. The proportion of patients with significant problems getting to a clinic but keen to take part has been really high. I am incredibly grateful to the people who have invited me into their home, particularly as many of these have very advanced disease, find it difficult to move about but want to contribute and take part.
This means that my work will not only take into account those people well enough to come to a clinic for a voluntary research visit but also those who are not well enough to do that easily; those patients whose voices are often missing from research.
I would encourage folk out there with PSP, CBD and MSA and their carers to engage with their local hospital and universities who are doing research. Let them know what concerns you, what issues dominate your lives, especially if they are things which your doctors and nurses don’t ask about – it may mean they just don’t know about it. Getting these ideas into the ear of the people who are in a position to design studies is key – they want to do research that matters too!
Furthermore, I did a (very scary!) PSP Dragons’ Den where patients and carers judged my research ideas and gave their perspective. Not for the timid researcher!!! More and more universities are doing this now – why not contact your local PSP meeting and ask if they are doing anything similar locally? Even if you can’t go in person, a letter, email or phone call can get your ideas and point-of-view out there.
Until next time, enjoy the spring!