Creating value from health-related information - CHES Roundtable

6 February 2012

Healthcare systems are under great pressure due to demographic change, increasing patient expectations, staff shortages, increasing number of people with multiple conditions and the shift to patient-centered care. So better and more efficient use of health information will be required to promote health and treat patients more effectively.

At this CHES stakeholder discussion, which received additional support from Oracle Corporation, Peteris Zilgalvis, Head of Unit for ICT for Health, DG INFSO, European Commission; Joseph Alhadeff, Vice President for Global Public Policy and Chief Privacy Officer, Oracle, and Nicola Robinson, European Political Adviser, Age UK highlighted some of the challenges and possibilities that rise with digitalised use of health data.

Health information is highly sensitive and the use of technology in healthcare poses a significant data protection challenge as more and more entities will access and share health related data. However, at the same time, better and more efficient use of health information can bring enormous benefits for the society, industry, healthcare systems and patients. It can help to improve public services, provide healthcare professionals with relevant information about patients’ medical history, and allow Europeans to receive accurate healthcare information.

Steps have already been taken in some EU Member States to improve governance of eHealth data, which includes improving interoperability between data systems, providing citizens with access to medical records and promoting secondary use of health data for research. However, the transition to creating value from health-related information has only started.

The European Commission has put forward a number of initiatives in order to improve the governance of eHealth data:

1)   On interoperability and continuity of care

European Commission is working on the definition of a minimum common patient data set that can be accessed or exchanged electronically across Member States by 2012. To support this, the European Commission-funded epSOS project, which involves 23 Member States, is currently testing the cross-border use of patient summaries and electronic prescriptions. The aim is to enhance interoperability between existing systems. In the process, it is good to remember that

  • The service must be designed for the user. Healthcare professionals and patients who use electronic data need adequate skills to use the information.
  • Enabling patients and healthcare professionals to access patients’ data would be extremely useful especially in cases when people suffer from multiple conditions and are treated by numerous healthcare professionals.

2)   On access to online medical records

The European Commission proposes that, by 2015, every European should be able to access his or her medical record online. This is already a reality in Member States such as Denmark, Sweden and Latvia. Naturally, this raises the issue of user authentication, but it is believed that the European Commission’s e-Signature Directive could be of help here. A number of aspects should be considered in this context:

  • The service must be readable and tailored for the user, and for his/her needs.
  • Access to health information should be secure. Management of identity and controlled access are needed to tackle challenges related to authentication of medical personnel and patients.
  • For example, in the UK, over 60% of people aged over 65 have never accessed the Internet and their literacy levels differ greatly. Thus it is important that medical information will be available also in other than electronic format. Whether the information is in electronic or paper format, the information must be understandable to all patients.

3)   On secondary use of data for research 

European Commission-funded projects such as TRANSFoRm and PONTE are promoting secondary use of health data for research purposes. At same time, the Commission’s proposal to reform EU’s legal framework on the protection of personal data will help to clarify people’s rights in this regard. Use of health data could also help to answer questions about causes and consequences of multiple conditions. Interestingly when health information has been used for research, experience shows that people seldom withdraw their data from such use.

4)   Data protection

All of the issues above raise questions about data protection. The Commission’s proposal to reform EU’s data protection rules is timely as it would help to strengthen people’s online privacy rights. As the discussion about data protection continues, it is important to remember that

  • The key is to promote people’s trust in the system.
  • Data protection guidelines should be implemented so that people have a better idea of how, where and with whom information can and should be shared.
  • Enhancing security and people’s confidence in online services requires that they can hold someone accountable for possible violations. Action must be taken if the system is abused.
  • Citizens should have access to their own health data and have the possibility to edit their information. However, this raises difficult questions about the consequences of altered or deleted patient history and whether the patient always knows what information to keep and to delete.
  • People should be able to share only what they want to share and they should be able to see who has access to their information.

In general, technology can support access and use of health information for the benefit of patients and health professionals. Tailored solutions have been developed and are available from the IT industry. However, creating value for the society requires also a European policy and a legislative framework. With its policies the EU can promote secure access and use of health information and enhance trust in the system. The work continues and a number of other supporting initiatives are already under way, such as the European Commission’s ‘eHealth Action Plan’ which is due before the end of 2012.