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Patient engagement and personalized health care at the EPF congress

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Irene Kanter-Schlifke, Program Manager at Lygature, attended the annual congress of the European Patients´ Forum (EPF) on advancing meaningful patient involvement. In this blog, Irene shares her main insights on the event.

With a rise in people living with chronic conditions, multi-morbidity and polypharmacy are increasingly becoming the norm.  Current healthcare systems are for the most part working in silos, meaning that both treatment guidelines and clinicians are focusing on one specific disease of a patient. This can for example result in patients being prescribed treatment for one condition that has negative effect on a comorbidity. Electronic health records can partially address this issue, but many countries still don’t have effective ways of utilizing these data. With healthcare systems not set up to address multi-morbidity appropriately, self-management by patients is ever more important, but not every patient is equipped for that yet.

The role of self-management and ‘the empowered patient’ was also discussed in context of the patient-physician relationship that is often experienced as paternalistic. Many stories told at the conference talked about a system that is focused on the biophysical/pathological aspects of a disease rather than its impact on a person’s life. Delivering care irrespective of the wishes of the patient seems to be the main goal. Patients are pledging to change this and to move to a system that supports the personal goals of the individual receiving care.

My purpose in life is not to go to doctors and to take pills – it’s to be happy. Healthcare needs to be a tool to achieve that, not a goal in itself’, said Marc Boutin, CEO of the National Health Council.

There is a need to move to a system where patients define what success looks like for them. Not every patient wants to explore all treatment options, many people only want the ones that will support them in achieving their own goals. Such patient-focused mindset will also be an important factor to bring down healthcare costs, as Alf Collins, professor at NHS, argued eloquently.

Patient organizations can offer their experience in this shift to a different healthcare system and support the individual by providing a community and by lobbying for their interests. However, patient organizations are faced with their own problems, the biggest being the constant fight for resources and attention in politics.

An interesting discussion during this conference also touched upon the importance of data in health. In this area there are many questions that need to be answered: who is the owner of such data? Who will decide on the accessibility of data? How much should patients be involved in these decisions when they may not be fully aware of risks for themselves and/or to others?

Data-related concerns aside, a truly personalized healthcare system will certainly see more influence from private companies that consider patients as empowered consumers rather than passive recipients and that combine consumer and health data to offer their users a personalized experience.

We live in challenging and equally exciting times, where technology is providing unprecedented access to knowledge and tools to manage health. It was inspiring to be part of discussions on how we can use the opportunities to address the challenges, and what role each individual patient can play in this. I am optimistic that we can achieve a lot with an open mindset and collaborative projects similar to the ones we are managing at Lygature. I am convinced that together we can move to a ‘healthier’ system in which its end-users, the patients, play an active role. But we need to do it together, as equal partners – from policy makers to the healthcare professionals working in the system and the patients that should benefit from it.

Please contact Irene if you would like to discuss patient engagement further.

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