The European Patients Forum (EPF) has recently launched a working group to guide and support its strategy on digital health with the aim of positioning the patient community as a driver of innovation and start a debate on what patients need and want on a daily basis from the healthcare system and its organisation, and how technology should be serving these needs. Our Director of Operations and Projects, Giuseppe de Carlo, is representing us in the Working Group.
This group is bringing its experience developed in innovative projects for the self-management of respiratory diseases and was established in 2018. We already had two meetings, one via teleconference and the second one in early July in Brussels. There, the Working Group discussed the content of a survey that EPF will launch on Electronic Health Record, to bring to the European Institutions the patients’ perspectives on this subject. The participants contributed to the discussion thank to their expertise and experiences, as for example the Dutch initiative MedMij. MedMij does not develop nor implement a Personal Health Environment, but it sets the rules, and ensures common privacy and security settings for all structures processing or storing health data. Moreover, in Estonia, there is a patient portal which allows all patients to have access to their medical and healthcare information, including time-critical data, case summaries, prescriptions, etc…
The Working Group will continue to meet via teleconference and meetings (the next one will take place in October) and will work on developing an EPF briefing on digital health.