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During the recent FHIR DevDays in Redmond WA (US), there were a couple of speakers representing the patient perspective. We recorded some video interviews in Redmond to discuss the increasing role of patients within the FHIR community and at FHIR DevDays.
“When we’re doing FHIR, we’re interested in health outcomes”, according to Grahame Grieve, FHIR Product Owner. The patients and their family members that take care of them are one of the key stakeholders in this process.
“Patients have to be at the table so that their perspective is heard. Bringing clinical and patient advocates to DevDays inspires the developers to see the bigger picture, to see this not just as an IT problem but as a health problem. Digital health is only a means to an end, so I’d like us to build in that direction.”
“Patients learn along the way what’s important to them. Let patients help, and they can’t help if they don’t have access to the data. Don’t prevent the patient from trying to help. Enable people with new knowledge and their health data”, according to Dave DeBronkart, also known as e-Patient Dave.
Dave: “I learned that nobody can perform to the top of their potential if the right information is not there at the time of need. Health IT has improved over the years, getting potentially lifesaving information and making sure that it is available wherever that patient ends up. We’ll need transparency, full visibility of the data. This will not cause miracle cures, but it will help for healthcare to achieve its potential. As a patient I want to create my own mashups of any kind of data, in order to do that we have to liberate the data. I’m thrilled that FHIR is making this a reality.”
Grahame: “We’re making progress, we’re seeing transitions, clinical providers are starting to look at what we’re doing and saying ‘we can imagine a different world’ – right now all we can do is imagine a different world, and I want to turn that from imagination to reality.”
DevDays meetings are not just about IT, but about things like process change and patient empowerment.
Grahame, when asked about the impact of his long term vision on DevDays: “If digital health is going to mean what everybody needs it to mean, then we need to have a much wider engagement. With DevDays you see a conference series much more focused on downstream application [of standards] rather than standards development. The next step after that is further into the clinical/ patient community. These are not sudden transitions, you plant the seeds of a community and watch it grow.”
At Firely we’re discussing hosting a ‘Patient Track’ for the DevDays meeting in Amsterdam, and we’re going to continue to invite prominent speakers to address the patient perspective. The aim is to help with the process of growing that seed.