Patients are not just stakeholders – they are experts

Theresa Mullin, Director of Strategic Programmes for the U.S. Food and Drug Administration (FDA) Centre for Drugs shares her views about the importance of recognising patients and caregivers as experts in a video filmed at the DIA 2016 conference:
Patient engagement involves directly communicating with patients about their experiences and perspectives. It’s about identifying what patients’ needs are based on their insight and expertise. Patient engagement needs to inform the entire medicine development process, from how patients participate in trials, right through to how their care is delivered.
The emerging trends that I see, are a broadening interest in patient engagement and a growing sense of urgency to make it happen.
There is a broad recognition amongst established organisations, whether they be federal agencies or large pharmaceutical companies, that a system of meaningful and lasting patient engagement needs to be implemented to create real change in the experience of patients and to deliver better medicines.
The patient advocacy community is growing and is becoming increasingly more organised –  social media and the internet have helped support this.
What is very evident at the FDA is the recognition that patients are not just stakeholders they are also experts.
The FDA has a long standing Patient Representative Programme where we consult with independent patients about decisions about particular products. This complements the patient engagement meetings we have, where patients and caregivers share their experiences and give us invaluable understanding, not only into the burden of disease, but also into the burden of treatment.  
The FDA is looking at how we can take these powerful qualitative insights that we gain from patients and caregivers and translate them into a set of measures that might be included in clinical trials. This would enable us to truly capture whether the drugs that are being tested show improvement in terms of what really matters to patients.
Watch the video to find out more:
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