How You Can Get Involved and Make a Difference
Many people donate to medical research, which is fantastic. But there are many more ways you can get involved to help on a practical level, even without scientific training, as experts in the health conditions you live with, and with skills in other areas.
Being involved in research is not just about being a guinea pig. Researchers may seek out your insights on living with a condition and what might help improve your quality of life, to inform the research they design and the outcomes they measure. Or they may need help writing grants, creating and reviewing patient-friendly information, marketing their research, finding people to participate, overseeing the research conduct, improving the participant experience, providing peer support, analysing data from the patient context, sharing the results of research with the patient community, and more.
Beyond being research participants, people who get involved in research report benefits such as developing more confidence to communicate with clinicians and researchers, better understanding their health condition, finding a purpose, and a sense of satisfaction at paying it forward/giving back. And research suggests that people that are more engaged in their health and care often have better health outcomes.
Your capacity, time, resources, and research interests may change over time, which is why we encourage people to share with our community a broad range of opportunities, across different therapeutic areas.
Connect with others sharing information and experiences, and to ask questions, via our Facebook group.
Look for clinical trials you might be suitable to participate in.
Attend events to learn and network.
Your experience matters. People gain the most value from hearing personal stories and experiences from those that have trodden the path before them. We want to help provide a platform for you to share your experiences, for others to learn from. Contact us if you would like to explore the ways you can share your story.
At all times, our commitment to you is to be transparent about our relationships, and the information and opportunities we present to you. Always ask if you have questions.