Marney has been involved in health research as a lay representative for about 18 months. She became involved after she had a stroke.
After she had a stroke, Marney started volunteering in her local Trust. This led to other activities, including an invitation to attend a national conference, where she heard a presentation by a representative from the Stroke Research Network and decided she wanted to be involved. Until then she hadn’t known that there was a role for patient and public representatives in health research, even though she had previously taken part as a participant.
After her stroke Marney had some problems with language, concentration and fatigue. She has overcome her language difficulties, but is still grateful that she can contribute to PPI online using the computer, where she can work at her own pace and think about what she wants to say. By the time Marney became involved in PPI, she had made a good recovery. She doesn’t always feel it’s always necessary to tell people about her stroke because she thinks it’s often irrelevant in her PPI work. Her involvement to date has included reviewing information sheets and funding proposals, and she is a co-applicant on a project too.
For Marney, PPI is about assessing whether research is valuable to patients and designed to encourage participation. She believes that by having a diverse range of views (researchers, health professionals and service-user representatives) around the table, research becomes more effective.
Even though people don’t need to do lots of reading to be involved in PPI, Marney does because she wanted to make sure her opinions were relevant and that she could make her voice count. She said people have to ask themselves, How effective can I really be if I can’t keep up with the same sort of documents that everybody else is dealing with? She believes in the value of the patient voice in research, and finds it rewarding to work with researchers and professionals to ensure they understand what is important to patients.
Marney finds PPI stimulating and she feels she can make a valuable contribution. The meetings she attends are enjoyable because they provide an opportunity for her to get to know other people and have interesting discussions. She found them exhausting especially at the beginning when there was a lot of new information to take in, but the researchers enthusiasm for her ideas made it rewarding.
After they’ve been involved in PPI for a while, Marney thinks people should evaluate what they are adding. She thought it was important to stay in touch with current patients because treatments and hospital policies may change over time, so previous experiences may not be entirely relevant anymore. She would encourage others to get involved saying, It’s a good way of engaging with life on a larger and related scale. She also thought it was important that researchers involve patient representatives from the very beginning, so they can influence the design of studies and the recruitment of subjects.