Why is the role of the patient voice so important?
Sunday 29th September 2019
(UK) Patients play an incredibly important role in raising awareness. We have found that giving clinicians and policy makers the opportunity to listen to patients who have experienced heart valve disease and everything which it entails makes the information resonate more.
(US) Without doubt!
(UK) We’ve also found this sharing of information and experiences informs decision making for treatment options in new patients. As well offering reassurance and comfort to the loved ones of those effected by heart valve disease and more confidence in the care they will receive.
(US) I would also add the important role the patient can play in research and the in the design of clinical trials. A patient will advocate for outcome measures that are important to patients like quality of life measures that would fall outside the normal clinical practices.
(UK) Very true. Our patients have been instrumental in influencing decision makers and guiding policy too. There is no way policy makers will ignore someone who has a lived experience of the problems associated with heart valve disease. Our patients voices have such power!!
(US) That power is invaluable and we are focused on harnessing it. Heart Valve Voice US recently received an award from the Patient Centered Outcomes Research Institute to train patients how to be meaningful participants in research. We will begin this training in 2020 and we are so excited about what we can achieve with it. We are building a network of patients who will be trained to make meaningful contributions to the design of research that will affect them and future patients.
(UK) Ultimately, our patients are our focus. They inspire us, but it is their capacity to inspire others to get checked and affect change in policy which make them so important. Our past, present and future patients will continue to strengthen our voice and help us make the changes we know are needed.