DCS: Hi Usman! Thank you for letting us have a conversation with you about the digital health workshop where you were one of the panelists. But, I believe before starting, we should put our readers into context. In order to do that, could you tell us a bit about yourself and your work?
UK: Currently, I am working as the director of the European Patients’ Forum (EPF). The EPF is a network of networks which looks after 71 patient-lead European organisations. We seek to drive forward and get the patient perspective to European policymakers; strengthening patients’ voice through advocacy, education, and training. Besides, we are involved in projects within Horizon 2020 where we are also trying to make that difference.
DCS: Since the main theme of this session was the future of digital health, could you tell us a bit from your perspective how you see digital health integrated into the work of the EPF?
UK: Digital is very important for us because so many aspects of health include digital. But what the notion of digital gives is a little bit of a restart, a new launching point. If you look at healthcare, it´s naturally paternalistic. So, what it does is that it glues on elements of safe patient engagement to this paternalistic system. What digital allows us to do is to reset and say: this needs to be, and it must be patient-led, patient-focused, patient-oriented. And, that´s why the EPF is very committed to understand and to help to shape the digital agenda.
DCS: We have seen these days and within the last years that digital health is evolving at a breakneck pace. Do you think patients will be able to cope and adapt to this fast-pace digital transition that is already happening?
UK: I think they are showing that they are. And I think they are taking the lead. If you look, for example, at people wearing smartwatches or having technology in their house: more and more people are learning to work with digital. They don´t view it as health digital, but they are simply using it.
DCS: How about the possible inequalities that might arise with the adaptation to digital?
UK: Yes, there is a massive risk of socioeconomic, cultural, or geographic inequalities developing around digital. Part of what the EPF does is to show or do what we can do to stop that from happening.
But the basic idea is that we need to understand how to engage with digital. It shouldn´t be a paternalistic model; it should be very much around co-creating a patient and patient-driven solution.
DCS: What would you like to see next year in Gastein, and what would you recommend to ensure a stronger patients’ voice?
UK: Well, I think you´ve answered the question because I´ve been already to several EHFG’s, and I think disruption is a very healthy theme to have. But what we haven´t done is to have fundamentally disruptive stakeholders come to Gastein. I think it would be great to have two levels of disruption. Firstly, we need a stronger patient voice, and the nobody-left-outside exhibition was a great example of where you can start. And then, secondly, we should jointly try to get non-health actors on board who are rarely seen at health events: where is Google, where is Facebook, where is Amazon? These would be my main two recommendations for future EHFG editions.
This interview was conducted by a Young Gasteiner Diana Castro Sandoval, Projects and Advocacy Manager at the European Forum For Primary Care, Spain