I've written many times on the power that can be derived from the free movement of our health data, especially when that data can be aggregated from the numerous sources of mobile, wearable and genomic data that we're increasingly generating ourselves.
A new report, commissioned by the Estonian government, aims to discover some of the barriers to the free movement of health data across the European Union. Pleasingly, in most countries, it reveals that those barriers are rather lower than we might think.
The report analyzed the eHealth ecosystem in five countries: Finland, Germany, Poland, Sweden and the United Kingdom (England), before gauging the public response to data sharing in those nations, and the various obstacles that might prevent sharing from occurring.
Free movement of patient data
It reveals that in most of the countries analyzed, the groundwork is largely in place for freer movement of health data.
"The basic premise – digital health records – exist in Estonia as in the European Union. Now, that electronic health data exists, we have to focus on developing services that would benefit people, public services as well as private,” the authors say. “The more services there are, the more these services are used and the better will be the quality of the data and the more we can develop better services.”
That's not to say that there isn't a lot of work to be done however, not least of which in the legal space, where the authors argue that modernization is required. They also propose the creation of a new infrastructure to support secure data exchange, complete with common and clear rules.
The public perception of data usage was interesting. It's a topic I've written about previously, with an analysis of attitudes in the UK and America revealing a broad support for the use of personal data in health research, with respondents typically thinking that such work is in the public interest and therefore for the greater good.
In Europe however feelings seem mixed, with people in Estonia, Finland and Sweden pretty relaxed, but those in Poland and Germany rather less so. This perception and attitudes issue represents one of the main barriers to free movement of health data, and the authors suggest it is a greater barrier than either technical or legal issues.
Bringing doctors along
Central to this shift is a change in perceptions of data usage (and ownership) by the medical profession themselves. The authors urge the profession to move towards a belief that they are merely users of health data, and that the patient themselves are the owners of their own data. This would require data to be moved from medical facilities and greater efforts made to help people understand and manage their health data.
It's why projects such as Understanding Patient Data are so important. The project, from the Wellcome Trust, aims to support better conversations about the use of data in healthcare. It aims to provide clear and objective evidence around a range of things, including:
- How and why data can be used for care and research
- What’s allowed and what’s not allowed
- What options patients have
- How personal information is safeguarded
"If we expect citizens to take better control of their own health and our health systems to respond more precisely to our patients’ individual needs we must enhance the citizens’ control of their health data and empower them to use it for their own benefit,“ the authors say. "We need to agree on how, what and when to do with data in healthcare, including exchange between providers within but increasingly between different countries.“
Estonia have form with the sharing of health data, and earlier this year announced a sharing arrangement with Finland. The plan allows for the databases of both countries to be mutually available, thus supporting cross-border access to things such as digital prescriptions in the coming year, before then progressing to full medical records by 2018-2019.
With Estonia currently holding the presidency of the EU Council, the creation of a digital single market is a clear priority for them.
"Our goal is to reach to the EU Council conclusions that give states wide political guidelines for the e-health policy and planning for the coming years, in order to accelerate and expand the use of medical information across borders," they explain. "In addition, we hope to agree on 7-9 joint digital project initiatives that would be carried out and funded by the Member States in cooperation with the European Commission."
It's an issue that's clearly on the minds of the European Commission too, as earlier this year they released a paper exploring some of the policy implications of data sharing in healthcare.
The paper breaks this analysis down into twelve distinct policy areas:
- Legal aspects, including privacy and data ownership
- Stakeholders, and their roles and responsibilities in this field
- Privacy and data protection, especially around systems to encourage good data governance
- Open data and data sharing, and the need for international guidelines to promote open data
- Standards and protocols, to ensure the interoperability of data sources
- Technological development, especially in areas such as data collection and storage
- Data sources, and specifically the need for legacy systems to work smoothly with newer forms of data, such as mobile and genomics
- Data analysis, and the need for both new analysis methods to be used, such as machine learning, but also to ensure those methods are ethical and appropriate
- Applications, as above, it’s important that big data applications don’t weld in biases or use poor quality data
- Communication, should include informing the public both of the benefits of big data, but also their legal rights
- Human capital, especially in terms of improving the data science capabilities across the health ecosystem
- Funding, needs to be funneled towards projects that support the use of open data in healthcare
The paper then provides ten distinct policy recommendations to help support this broad agenda.
- Awareness building -“Develop and implement a communication strategy to increase the awareness of the added value of Big Data in Health and encourage a positive public mind set towards Big Data in Health.”
- Skills and training – “Strengthen human capital with respect to the increasing need for a workforce that can utilize the potential of Big Data in Health.”
- Data sources – “Expand existing and explore new sources of Big Data in Health and secure their quality and safety.”
- Data sharing – “Promote open use and sharing of Big Data without compromising patients’ rights to privacy and confidentiality.”
- Use cases – “Target-oriented application of Big Data analysis in health based on the needs and interests of stakeholders including patients.”
- Data analysis – “Identify the potentials of Big Data analysis, improve analytical methods and facilitate the use of new and innovative analytical methods.”
- Data governance – “Implement governance mechanisms to ensure secure and fair access and use of Big Data for research in health.”
- Data standards – “Develop standards for Big Data in Health to enhance and simplify its application and improve interoperability.”
- Funding – “Ensure purposeful investment steered by the European Commission to warrant cost-effectiveness and sustainability.”
- Privacy – “Clarify and align existing legal and privacy regulation of Big Data in Health.”
There is tremendous potential in this area, and despite some pleasing early steps, both in the case studies referenced in the paper, and projects such as the Precision Medicine Initiative in the US, there is still a lot of potential untapped. Hopefully however, we're inching closer and closer.