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The value of data sharing for healthcare in the EU

01.07.2020
Ismail Ismail
Opinión

Views, thoughts, and opinions expressed in the text belong solely to the author, and do not represent the views of the Support Centre for Data Sharing or the European Commission.

The European strategy for data, communicated by the European Commission (EC) earlier this year, outlines the ambition of making the Union a role model in the global data economy.1 A highlight from this communication specifies the aim ‘to capture the benefits of better use of data, including greater productivity and competitive markets, but also improvements in health and well-being...’. The latter part of this statement is one of much promise: data-driven innovation could potentially improve the health and lives of millions of citizens across the continent. At the heart of the EC’s ambition lies one clear enabling factor: data. The effective sharing of data may well be the key to promoting this ambition to a reality.

The personal nature of the majority of healthcare data however makes data sharing an exceptionally intricate issue. Navigating the path to better capturing the value of healthcare data therefore requires extra attention, but considering the potential benefits, it is definitely a path worth exploring. To help do so, we first delve deeper into the perception of sharing health data in the EU. Second, we explore the health systems performance assessment (HSPA) framework to consider the benefits of data sharing in healthcare, and last, we evaluate the potential of data sharing for healthcare systems using this framework.

European perceptions of data sharing in healthcare

The abovementioned ambition puts European healthcare industries in an interesting position. On one hand, there has never been a stronger imperative to better leverage patient data and partake in data sharing. On the other hand, the notion of data sharing is bound to reservations regarding regulation and protection of privacy.

A public consultation carried out by the EC in 2017 across individuals and organizations in its Member States sheds light on some of those reservations.2 Risks of privacy breaches and cybersecurity incidents were named among the major barriers to electronic sharing of health data. In addition, some concerns were raised by individuals over access to and potential exploitation of their health data by commercial organizations and governmental bodies without consent, confirming a notion of scepticism.

Nevertheless, the general outlook from the public on the potential of sharing healthcare data is largely positive. The same consultation yields that 83% of respondents agree or strongly agree with the statement: “Sharing of health data could be beneficial to improve treatment, diagnosis and prevention of diseases across the EU".  Given the right amount of caution and protection, the public seems willing to explore the benefits of sharing health data. The imperative from the EC to better capture the benefits of data in healthcare is thus one that should be welcomed with enthusiasm by plenty.

HSPA as a guide to navigate the potential of data sharing for healthcare

Shaping data strategies to enable better capture of the potential of health data requires a delicate assessment of the value of data sharing. Beyond the desired caution expressed by the public, it is important to be able to clearly outline the benefits of consenting to data sharing for a healthcare system. The use of a health systems performance assessment (HSPA) framework can act as a valuable guide to explore the value of data sharing. HSPA provides a holistic framework to consider the impact of data sharing on the performance of a health system in its entirety and contemplate healthcare outcomes beyond health.  

The definition of “health system” was introduced and further developed by the World Health Organization (WHO) as “… all the activities whose primary purpose is to promote, restore or maintain health” 3. While health systems in the different Member States obviously vary in their structure and funding, it is fair to presume that most encounter similar challenges and share the same goals. The general consensus is that any HSPA framework should reflect the following health system goals.4 5 

  • The improvement of health, including average level and equity of health;
  • The responsiveness to citizens’ preferences;
  • The financial risk protection and accessibility offered;
  • The productivity or efficiency.

These goals provide four dimensions that can effectively be used to explore the added value of data sharing for a health system and navigate future data sharing strategies.

Improvement of health

Improvement of health is conventionally measured by indicators such as mortality and quality of life.  The articulation of equity is particularly interesting as it reiterates a fair distribution of health across society. With that in mind, data exchange could improve the health attributed to a health system in several ways. First, data sharing between healthcare providers would contribute to a more comprehensive view of a patient’s history to better determine treatment options and prevent contraindications. Moreover, data sharing between medical facilities and research institutions could advance medical research and the quality of future treatment options. Last, data exchange allows better patient management to make sure that those who are most in need of medical attention flow through the healthcare system effectively.

Responsiveness to citizens’ preferences

The domain of responsiveness mostly concerns the level of general satisfaction with the healthcare system in catering to patient preferences. Health systems that allow for patient involvement in medical decision-making and tailored treatment options generally perform better in this domain. Data sharing could improve health systems by making them more patient-centric, while enhancing informed patient choice. A patient-centric data-sharing platform could help healthcare providers in better tailoring treatment to a patient’s preferences, while making sure all data is readily available to the patient. This could also improve patient involvement and empowerment. Moreover, disclosing information on the performance of healthcare organizations would provide citizens a level of transparency needed to make informed choices between healthcare providers.

Financial risk protection and accessibility

This domain concerns the protection offered against financial hardship as result of healthcare utilization, and the financial accessibility to healthcare services. The organization of healthcare coverage varies across the EU member states, however many share similarities in that they incorporate some form of regulated competition between health insurers with subsidisation for citizens who cannot afford coverage6 7. To sustain accessibility for all in such systems, it important for the good of society to ensure that insurers do not discriminate plan holders against their risk profile. Many of these partly regulated health systems depend on some form of risk adjustment for patient groups with predictably high or low medical expenditure to prevent this. Risk adjustment systems could however be improved greatly if provided with the right data. Combining clinical, claims, and social administrative data for example could allow for more accurate adjustment to further reduce incentives for discrimination, ultimately resulting in better financial accessibility for all citizens.

Productivity

The productivity of a health system is expressed by the value-for-money provided by the health system. The value-for-money is both dependent on the cost-effectiveness of the care that is covered in a health system as well as the efficiency of healthcare providers, both of which could be improved through data sharing. Data exchange could open up a treasure of real-world insights on treatment effectiveness to shape more efficient care plans and trim ineffective care. Additionally, disclosing performance indicators could allow for benchmarks to drive competition between healthcare providers while allowing them to learn from best practices. Furthermore, data sharing between healthcare organizations could provide insights to streamline the patient flow through different care providers. The exchange of information could help assure that patients receive the right care at the right time to reduce unnecessary referrals and prevent avoidable readmissions.

Closing remarks

Data sharing in health is met with both caution and scepticism as well as an abundance of promise. As the imperative to better leverage health data has never been greater, it is important to shape data strategies that not only give thought to the reservations of the public, but also clearly outline the untapped value of data sharing. HSPA provides a good starting point to do so. The benefits explored in this article only touch lightly on the topic but, most importantly, act as an encouragement to further map the benefits of data sharing for health systems in their full spectrum.

 

About the Author

Ismail Ismail is a management consultant at Capgemini Invent. He holds a background in health economics and has a particularly strong understanding of healthcare systems and regulated markets. As part of the Business Data Strategy team, he advises clients in both public and corporate sectors on how to leverage data and advanced analytics to drive strategic value.

  • 1. A European strategy for data. European Commission (2020)
  • 2. Synopsis report Consultation: Transformation Health and Care in Digital Single Market. European Commission (2018)
  • 3. The World Health Report 2000: Health Systems: Improving Performance. World Health Organization (2000)
  • 4. Health system performance assessment in the WHO European Region: which domains and indicators have been used by Member States for its measurement? World Health Organization (2008)
  • 5. Health System Performance Assessment. European Commission (2014)
  • 6. The management of health systems in the EU Member States - The role of local and regional authorities. European Committee of the Regions (2017)
  • 7. Coverage, access and financial protection in Europe: a regional overview. World Health Organization (2017)

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