You run many activities in the area of patient empowerment. Which of them do you devote most of your time to, and why? My big passion is the role that patients play in healthcare – how we can become more engaged and a part of every decision made about our care. I very much believe that technology can help with this. We all use digital and social media in all aspects of our lives except healthcare, so I am especially keen to show how tools such as SMS, social media and Skype can become part of the healthcare interaction between patient and doctor.
I also founded a connected device company while going through a transplant. That saw me engaging with healthcare from a different perspective. This now takes up a large part of my time as we learn how to scale up a patient-led innovation.
As a "Voice of the Patients”, what would you say is the biggest issue that needs to be solved?Firstly, I would say that I do not represent anyone. I just try and use my own experiences to show others that there are new ways of engaging; new tools at our disposal to build relationships. The biggest issue is fear. At the moment, it takes great bravery from clinicians to engage with patients in a different way. It also takes great bravery for pharma companies to come out from behind the curtain and talk to us. For me, the biggest challenge is cultural change. Going from a default position of "no, we can’t" to a position of "yes, and how do we figure out how to do it?"
Can you provide us with deeper insight into your activities as a patient ambassador?I have a number of roles within healthcare and feel very lucky to be part of many conversations. The role of patient entrepreneur is something I take very seriously. I want my company 11Health to show other patients that they can provide solutions to issues and they can then scale them up.I am Co-Chair of the NHS User Council on Digital Health, which is an exciting way to be part of the future of technology within the NHS. We play a strategic role in ensuring that all new technology is steeped in patient feedback, co-development and co-design. Finally, I am the first e-Patient-in-Residence at Stanford for their MedicineX programme. My role is to deliver insight on how patients can play a key role in education, design and innovation in healthcare.None of what I’ve done has ever been planned. I have just been lucky enough to use my personal experiences to play a very small role in the development of healthcare and especially digital health.