Yesterday December 11th, 2019 marked an important day in Helsinki Finland. The European Connected Health Alliance (ECHAlliance) convened to organize the Digital Health Society conference for 2 days.
The event was noteworthy for really bringing together government, industry, incubators, accelerators, technology providers, patient group leaders, universities and startups.
It was a lot of content to cover and by no means is this a comprehensive review of every panel and interaction but a brief review on the highlights from Day 1. Day 2 review will be published next week.
The future is here, it is just not equal
Finland is a leader in digital health and has been innovating in the space since the 1960s. It made natural sense for the event to be hosted here with a strong participation from Finnish government stakeholders as well as startups from the Nordic country.
The data speaks for itself. Finnish people also lead in studies relating to the desire to control their electronic health records. Hannu Hämäläinen from the Finnish Innovation Fund provided a presentation on the past, present and future initiatives for health data in Finland.
It's not a mistake that Finland leads in digital health and electronic medical records.
What was insightful was that digital health records flourished in Finland because most of the other social services are already online. Between coffee breaks I had the opportunity to speak to several emerging governments and leaders in population health data, one of the main issues was authentication.
Allowing people to authenticate into an online record becomes an easier task when people are already used to logging in to vote and interact with the government.
Other governments are exploring allowing the doctor to provide their patients with a first time code to authenticate patients. Other formats such as providing codes or authenticating online like a bank account seem like non-starters for many of those responsible for implementing systems.
Finland is collecting an unprecedented amount of electronic health data and part of the subtext is there is an enormous amount of potential for secondary uses of the data. This data collection will increase globally as new devices enter into the hands (or wrists) of people.
Obviously interactions with research institutions, universities and other stakeholders becomes important but more importantly in what context the patients are providing consent, receiving compensation or notifications on how their data is used.
Consent and patients receiving updates on how their health data is used is key
Receiving informed consent for research from rare disease patients is a critical step on solving some of the world's rarest diseases. It becomes impossible to understand these complicated diseases without the subjects themselves. As many people take the approach that data is the new oil, Day 1 of the ECHAlliance served as a reminder that we must treat health data like a raw precious material not oil which is often times extracted without concern for its surroundings.
Sandra Courbier, Rare Barometer survey programme Senior Manager, EURODIS - Rare Diseases Europe, presented the first large scale studies on how rare disease patients interact with consent.
It was very informative to receive this patient perspective alongside vast secure regulated networks of health data collection. It provides the human element on how patient's feel not only during their sickness but on how their data is used and how they feel about their health data being used.
During, the BioData West Conference in San Diego 2019 a rare disease patient and now researcher mentioned that often times informed consent is collected in a rush while being wheeled into the surgery room. These experiences go far beyond a global series of standards to transfer health data or receive consent - they open our eyes to the ethical and moral elements of acquiring and receiving consent for health data research.
Key takeaway: Informed Consent AND Keeping the Patient Informed are vital
Once informed consent and satisfactory patient updates are provided, the future is here
Hospital data and clinical data once a patient reaches health care providers is only one sliver of the potential data we can process to help people make more informed decisions on their lifestyle choices for preventative health.
The next versions of the digital health ecosystem using connected health data and lifestyle data are likely to hold the keys for people to live longer, healthier and happier lives.
This optimism also has many points of potential failure. Maritta Perälä-Heape, Director, Centre for Health and Technology at Faculty of Medicine, University of Oulu provided an overview of the importance of trust and security in the ecosystem:
However challenging, the benefit of establishing a unified, secure solution for health data is worth the obstacles.
Angela Ibald-Mulli, Head, Medical Evidence Generation Primary Care at Sanofi, spoke about the importance of developing a secure interoperable way to use health data for research while maintaining the patient perspective.
Hospital data and clinical data is the tip of the iceberg:
Conclusions from Digital Health Society Summit Day 1
It is clear that health data has the potential to drive innovations of the future. Technically, the implementations of secure interoperable government-led initiatives are possible and it is clearly active and thriving in Finland. The Finnish are in a strong position to become thought leaders in how consent is managed and how secondary uses of health data is monetized.
There is healthy cross collaboration between the ecosystems throughout Europe. ECH Alliance is becoming an important glue in this equation (and beginning to do so globally). Finland and Estonia (covered on Day 2) have a prime example of cross border collaboration on solving problems together and learning from each other when implementing solutions.
Finland, Estonia and Europe are already thinking about granular consent for patients which will herald a new era for patients. It will no longer be consent once and use anywhere versions of informed consent which unfortunately have become the norm and our society has been conditioned to with the use of big tech.
Questions that remain unanswered
Will there be a new standard of informed consent that is granular? Will this become a law or will it be left to moral and ethical choices between companies and the "data collectors"?
What kind of disciplines will we need to herald the new era of informed consent? Designers, philosophers, sociologists, legal experts - who else?
It certainly feels like the industry is trying to keep up with GDPR and how health data fits into this framework. The introduction of added details on the ethics of health data and aggregated uses of health data require more focus.
Finland and Estonia have challenging questions ahead as it relates to consent management. The world is watching but if history and Global Indexes are indicators, we are in good hands.
As a temporary human on this world there is a reason to be optimistic. I'm grateful that the ACHAlliance brings people together to actively discuss these important topics and hard questions that will impact future generations.