Return to the roundtable: Patient advocacy is still personal
The health landscape is changing fast. People participate in their own wellness more than ever before and the emergence of digital health and online platforms means more opportunities to track fitness, join like-minded communities, and advocate for better treatments and outcomes.
These advances enhance patient advocacy…but they don’t replace building long-term relationships in person. As more tech enters the scene, I see the potential for some to substitute the foundations of successful patient advocacy for online avatars. This would be a mistake.
Patients provide personal perspectives to healthcare systems, regulatory bodies and industry and it’s encouraging to see the way they use these new technologies to raise awareness and lobby for better access to medicines. My point is that those are places to start, places that showcase how big and broad patient and carer communities actually are. The full advocacy journey still requires person-to-person conversations through three main tenets that will continue to be important in 2017:
- Participatory medicine: Patients are demanding to be co-partners in decisions about their care and to be recognised as not just passengers, but people with the experience to be drivers of their health. This is really the crux of a person-centred approach, one that focuses on the needs of the patient rather than the needs of the service. One-to-one conversations with physicians but also industry roundtables mean reduced medical errors, increased patient satisfaction and improved cost of care make it onto priority lists.
- Patients in the Pipeline: Usually ‘expert patients’ are engaged at the review stage of a product lifecycle but momentum is building for involvement at a much earlier stage in the medicine development process, in person if possible. Initiatives like Patient Focused Medicines Development (PFMD) [http://patientfocusedmedicine.org/] seek to facilitate consistent and more meaningful patient engagement in the medicine pipeline process.
- Keeping connected: Digital technologies provide new opportunities for starting or continuing conversations. “Exposed” patients in particular are changing the face of patient advocacy by sharing candid insights about living with or caring for someone with a disease and, in doing so, are able to lobby for access, raise funds and awareness. They are the experts of their own experience and have a place at the decision-making table. That means there will always be need for face-to-face communication with the decision makers themselves, particularly at medical meetings and roundtables where other kinds of experts can participate.
Industry can lead innovation in patient engagement by creating and sustaining a meaningful dialogue that goes beyond what can be cultivated online. That’s what it means to put people, not patients at the centre of the business.
By Claire MacKenzie