PFMD member Dawn Richards and Vice President of the Canadian Arthritis Patient Alliance (CAPA) and Director of Patient and Public Engagement at Clinical Trials Ontario shares her views about the importance of collaboration in patient engagement:
CAPA is a patient advocacy organisation for people who live with all kinds of arthritis and I have lived with rheumatoid arthritis for about ten years.
I am very passionate as a PhD-trained scientist and as a patient about the need for patients to be involved in medicines development from the start and throughout the development pipeline.
I believe the medicines development industry has often looked to healthcare professionals and researchers to be a proxy for the patient voice. Too often patients have been missing from the process. We need to move beyond that – patients can speak for themselves, I am really excited that this is happening more often now.
Patients often do not know they can contribute to medicines development and when they are aware of the possibility they are usually very enthusiastic. However, patients can be intimidated by the process and believe they do not have the expertise to bring to the table. It is important to encourage them to understand that in many cases their lived experience is the value that they bring.
At CAPA we tend to reach out to stakeholders via social media (Facebook and Twitter) and generally we collect their opinions and voices through online surveys. We often partner with bigger organisations to achieve our objectives such as the Royal Arthritis Society to help participate in interview processes.
An initiative like SYNaPsE, the PFMD global patient engagement mapping and networking tool definitely helps small primarily volunteer driven organisations like CAPA. We are a group of people with a chronic illness so are often limited in terms of how much we can do. Being able to access SYNaPsE and connect with other initiatives and organisations is invaluable. It’s a great example of how much we can achieve together rather than in operating within our individual silos like we have in the past.
My ultimate goal and vision for meaningful patient engagement is about creating a framework and process where the patient is elevated to the centre of medicines development. It is about collaborating so that we can start to achieve goals that make a real difference to people’s lives in a way that we couldn’t as individual organisations.
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