Health app developers: health data belong to users

The session “Building on data in health tech” at Estonia’s largest technology conference Latitude59 focused on the methods for creating new applications based on collected health data. At the same time, it was emphasised that the data collected belong to people and they must above all be used for the benefit of their owners.

This year, Science Park Tehnopol cooperated with the main organisers of the conference to treat participants to a session on health tech and its exciting possibilities, in the opening address of which Priit Kruus, representative of Dermtest, emphasised that there is a need for new models for using health data and the funding thereof.

The session was opened by Alain Bicqué, CEO of Detalytics data analysis platform. Detalytics develops algorithms that help people understand what their body is trying to tell them. According to Bicqué, they are active in a field that people are aware of, but often live in denial, because they must change their lifestyle. For instance, people do not often understand the importance of sleep, but long exposure to sleep deprivation can cause many diseases or influence various aspects of human health that we do not even acknowledge.

There are people who do something about their lifestyle if a problem occurs, but this is only one data point. Usually, we only measure certain data, but lifestyle as such is too complex to change it via better sleep or diet. He emphasised that there are a lot of data, but they do not provide enough knowledge.

Lifestyle remains a so-called black box that Detalytics is trying to open. To this end, input is taken from lifestyle data sources, but information is also obtained via devices and questionnaires. Consequently, different platforms have been developed that feature medical evaluations, mathematical models and algorithms in addition to the data entered by people themselves. There are several applications for Detalytics’ algorithms, but the current focus is on fatigue experienced by people who work in shifts (health professionals, pilots and flight controllers) and their readiness for work. The platform attempts to map a specific person’s condition at a certain point of time and take their individual situation into account. “Regulations cannot be built around averages: solutions need to be individual and precise,” said Bicqué.

He emphasised that the main principle that cannot be bent is that data always belong to people and they must be used for the benefit of their owner.

The importance of data protection was also addressed by Ida Tin, founder of one of the fastest-developing women’s health app Clue. The app has more than 11 million active users and it is one of the most popular apps in the Health & Fitness category.

Tin provided an overview of the app, which helps women to monitor their menstrual cycles in order to get a better understanding of what goes on in their bodies. “When developing consumer tech in health, it is not enough to give people data points. We also need to provide context or educate users about the meaning of these data. Our solution is to offer high-quality, trustworthy information. “We strive to be inclusive, emotionally intelligent and not to talk down on people; to take them seriously,” said Tin.

‘Period tracking’ is one of the most searched terms in app stores – it is above ‘fitness’, ‘meditation’ and ‘running’. According to Tin, collecting data on menstrual cycles is logical, because they have a broader effect on women’s health. Data are collected via different devices and people also monitor themselves.

“I have a huge responsibility and I have to do everything I can to keep that data protected. I don’t think selling data is the right thing to do. There are a lot of tech founders out there who look at this quite differently than I do, but I believe that we have a huge task ahead of us, as a tech community, to develop best practices for how we think about people’s data,” said Tin when talking about data and added: “We need to educate users to demand that we take good care of their data. We have earned users’ trust in six years and I don’t take this for granted.”

“As guardians of these data, we must serve our users, but also the society at large. “With users’ full consent we have done a lot of science collaborations, which has allowed to create new knowledge and bring that back to our users. We need to enable users to demand that we take better care of their data,” said Tin.

Tõnu Esko from the Estonian Biobank talked about how genetic data help to lead a healthier life and offer possibilities for promoting health care. “If we know that the genetic risk is different – if we have a higher risk of, for example, diabetes, maybe we would put a little more effort into being healthy and move a bit more,” Esko provided an example. He also provided examples of the links between using medicines and genetics. “Usually there is only one kind of a drug for one disease, but we are genetically different. For some people, the dosage prescribed by the doctor works just fine, but for others, the drug has an effect, but the dosage is wrong. There are cases where the treatment does not work, but there are still side effects; or there is no effect and the person is simply a burden to the health care system,” he said.

By the end of the year, the Estonian Biobank will have the data of 200,000 people and is now seeking solutions for integrating these data into the health care system. “The question is, do we have enough genetic and health care data to come up with new solutions,” Esko explained.

Currently, the Estonian Biobank has prepared risk scores based on participants’ genetic risks and a visual solution on how to change your lifestyle or use interventions to keep yourself healthy. It also includes information on medications – what to take and what are the suitable doses.

In the future, there is a plan to expand the biobank, so that all Estonians would be genetically profiled. This can be used in the health care system, for research activities and to offer new business creation solutions. The latter would be attractive to both solution developers and investors.

Data security

The session was followed by a discussion that firstly addressed the question of security with experts being asked to share recommendations – people are used to different digital solutions in Estonia but everywhere else, they are afraid to share their data.

“Our 15-year experience has taught us that one simple solution that works is transparency. It is understandable that people are intimidated if they do not understand what is going on. One example of transparency is people seeing which doctors have looked at their data, when and for what purposes,” explained Ain Aaviksoo from Guardtime.

Costs, awareness and legislation were brought out as the main obstructions to adopting working solutions.

“Implementing a certain solution into the national system is extremely expensive. Another aspect is the system’s readiness to adopt innovation,” Tõnu Esko noted. However, impact on health care level only occurs if solutions or services are implemented into the national system and can be used by doctors daily. This is also a question of awareness and legislation.

Trust is important, too: “Solution developers must be ethical, and data must not be sold. It is necessary to come up with a solution that shares only part of the data or a system where you can choose which data to share and monitor where the data are actually going. Data are valuable and people do not want to just give them up,” added Alain Bicqué.

Dermtest, Detalytics and Guardtime belong to the Connected Health cluster managed by Science Park Tehnopol. The Connected Health cluster is Estonia’s largest health tech community, which brings together health care service providers, health tech companies and all other key stakeholders in this field. The cluster contributes to the organisation of national cooperation projects and helps to export health tech solutions to other countries.

Latitude59 took place from 16 to 17 May in Tallinn.