The Platelet Charity is seeking to involve people suffering with Platelet Function Disorders (PFDs) to be the patient voice in order to help us with :
– Reviewing patient literature
– Providing guidance on patient initatives
– Informing our strategy for research grants
This role can be undertaken for the most part remotely via phone/email/skype contact with one or two face to face meetings a year taking place. The Trustees are happy to include this role in the trustee board subject to joint discussion and agreement.
For many medical charities, patient involvement is incredibly important as it helps drive policy areas, and it is used widely in research – from setting strategies to informing peer review of research and helping with recruitment for studies. The AMRC (Association of Medical Research Charities) uses the term patient voice which they define as:
“All activities that seek the views of patients and their families in the diagnosis, management and treatment of diseases and long term conditions. This also encapsulates the views of care givers, the wider public and healthcare professionals.”
Patients, as well as their families and carers, can give invaluable information concerning their disorder or long term condition. They experience this first hand and so have the most accurate information on what symptoms are the most difficult to deal with, how a long term condition impacts their relationship with others, and their ability to go about day to day life. This unique information can help charities set priorities in research, inform peer review of grant applications and help to shape research protocols to make research more patient-focused and feasible. Patient voice is also useful in the policy arena as understanding what matters most to patients, can help to create a better research environment so that newer and more effective treatments can reach patients sooner.