Pierre-Mikael Legris (@Perkiz), a Swiss software engineer, has a clear idea about how to empower patients and citizens to become CEOs of their own health. He had to learn the ropes himself when, as an acute leukaemia patient, he had to visit the hospital on numerous occasions for tests, treatments and follow-up visits. ‘I realised that collecting data about myself was very helpful for healthcare professionals. I collected all sorts of data: how I felt, what I was eating, my daily physical activity, environmental information… I even made doctors realise that one particular treatment was not working,’ says Pierre-Mikael. Having observed how useful it was to provide healthcare professionals with patient-reported data, he went on to design a digital solution (Pryv) that helps patients keep track of their health data, among other functionalities. Pryv’s mobile app allows patients to exchange their data in real time with professionals and family, and to share their information for research and analysis.
At the workshop ‘Empowering Patients and Citizens to Become CEOs of their Own Health’ held at the HIMSS Europe & Health 2.0 Conference during the last week of May, close to one hundred professionals working in digital health discussed new ideas to help promote citizen and patient empowerment. Legris introduced the session and encouraged the teams to work on empowerment proposals that could be put into practice after the conference.
Data as a fundamental ingredient
One of the key messages was that patients are all different and cannot be treated as a whole when talking about empowerment. Patients have different digital skills and their levels of health literacy vary, so empowerment strategies should be customised. Data was another key concept in the workshop.
The access and ownership of data is fundamental to empower citizens and patients and we should move from EHR (Electronic Health Records) to Personal Health Records (PHR). Data in the hands of empowered citizens can be a catalyst for new businesses and can boost research. At the same time, patient-reported data should be integrated into medical organisations and be taken into account by healthcare professionals and researchers.In an era in which big data is going to transform the way we deliver care neglecting such information is not clever. As Pierre-Mikael Legris puts it, ‘patients should be seen as the main hub of information in healthcare’.
And of course, in an scenario in which there is a free flow of data from patients to medical organisations -and the other way round- interoperability must be guaranteed. The adoption of standards by organisations, companies and the various stakeholders can not be postponed.
Another crucial concept discussed in the workshop was privacy. But what is privacy for patients? Just as patients are different, so are their notions of privacy. The idea of privacy changes in every person and it has a strong cultural connotation. That is why privacy should be approached with a different perspective depending on the country or the culture of the patient.
Other key ingredients to promote patient empowerment highlighted at the workshop are the need of governmental policies that encourage self-care and responsibility for our own health; a fluid relationship between doctor and patient based on trust, and more health education to reach out to all sectors of the population.