The Future of eHealth and Personal Data Control
by zeynep | 24 Oct, 2017
Fig.1: The complexity of health data ecosystem. The image is taken from http://www.who.int/ehealth/en/
The efforts to use ICT (internet and communication technologies) solutions to tackle health-related issues have been named under the umbrella term eHealth. The first European eHealth action plan from 2004-2011 focused mostly on increasing the efficiency of health services by providing electronic prescriptions and health cards. The second action plan, which started in 2012 and will be completed in 2020, widens the focus of eHealth initiatives. The four main areas that the new plan focuses on are:
• Supporting research, development, and innovation;
• Promoting international cooperation;
• Achieving wider interoperability of eHealth services;
• Ensuring wider deployment & facilitating uptake.
The impetus for developing eHealth solutions comes from their potential to bring about a number of benefits. Some of these benefits are greater effectiveness and efficiency in areas such as health monitoring, data analysis, and delivery of services and care; more patient control over their personal data; and new opportunities for peer support via patient social networks. eHealth solutions have the potential to streamline the fields of health informatics, telemedicine, prescribing, and more. However, for a variety of reasons, these goals are difficult to realize.
Challenges in eHealth
It is particularly difficult to implement technological solutions in the domain of health. As seen in Fig.1, the complexity of health services cannot be dealt with by providing services only for certain, select healthcare professionals and patients. A service’s ability to address inequalities raised by the ‘digital divide’—the divide between those who do and do not have the skills or access to use digital technology—is all the more important when dealing with life and health. And of course, there are significant and often murky legal liabilities to be considered when working in the field of healthcare.
Alongside the large and diverse field of stakeholders, goals, capabilities, and standards, it is also crucial to consider the sensitivity of health data, which may be the most personal data that one can share online. New EU General Data Protection Regulations (GDPR) are making even stricter guidelines for using health data than previously existed to protect patient privacy. This high level of sensitivity and regulation, while necessary, restricts the proliferation of technological innovations that may increase efficiency and reduce costs in healthcare, and has hampered the development of open source eHealth solutions in particular.
Developments in eHealth
Despite this complexity, the future of providing and obtaining eHealth services is progressing. There have been promising developments utilizing eHealth applications to support patients with chronic illness, self-monitoring, and bioinformatics. Particularly innovative strides are being made to foster more patient control over their own personal health data. According to Nesta Health Lab, recent innovations in eHealth services can be considered as “social movement for health” as it becomes increasingly important to place the patient firmly in the controller seat while sharing knowledge and data about health.
In the following section, we present a few existing eHealth initiatives, projects, and services, focusing especially on those that empower patients to control their own personal health data.
Crohnology is a platform that aims to bring together people with Crohn’s disease. The founder of the project, who is also diagnosed with Crohn’s, explains that patients have a wealth of valuable knowledge that becomes an important part of their care. For that reason, the platform encourages people to share their experiences, knowledge, and improvements so that they can contribute to medical research. Patients not only share chronological timelines of their disease and treatment progress, but also ask and answer questions about medical research. Although privacy settings and content management are not personalized, the platform exemplifies the importance of patient-to-patient sharing which can contribute to building collective knowledge.
The Platform for Engaging Everyone Responsibly (PEER) is a U.S. based platform for collecting health data from individuals, with an emphasis on consent management. The platform provides personalized data sharing and privacy settings for patients, which are called “privacy directives”. In order to engage more individuals in medical research, and accomplish their long term goals, PEER has become an open source platform. In the future, the platform aims to develop tools to work with genomic data, and build mobile applications with different language options.
Instead of sharing data, Patientslikeme highlights the donation of data. The platform enables patients to share their symptoms, information about treatments, results, and their progress. The data is aggregated by the platform and turned into statistical information so that researchers can better realize what works or does not work for certain diseases.
It is possible for patients to choose two privacy levels while using the platform: “public” or “members only”. However, the platform categorizes three types of data, which are shared data, restricted data, and platform use data. The users have no control over this classification. Therefore, the limited privacy settings on this platform render the donation of health data questionable.
Unlike the previous examples that aim to build a community fostered by sharing health data, Midata offers a secure place for patients to gather their health data. This way, patients can take full control over their data and share it with people or institutions they choose. Midata operates in a similar fashion to cloud storage services, but with much more attention to privacy.
“Empowering patients to manage their care, enabling professionals to share information while improving efficiencies for payers”
Patientsknowbest, as the name itself explains, is a social enterprise company that puts an emphasis on how crucial patient knowledge is for healthcare. PKP offers an elaborate portal where patients can track their medical records and lab results, obtain interactive care plans, and communicate with their healthcare providers. Most importantly, these services all depend on whether the patient gives consent to share her information or not. Beyond obtaining effective and secure healthcare, by taking responsibility over their health data patients can realize the importance of their contribution to medical research as well.
Glucosio is an open source project that develops apps for diabetes management and diabetes research. In addition to providing feedback and tracking on glucose levels, Glucosio apps also give users the option to opt-in to share anonymized data with researchers. It is also possible to join community discussions either for improving the project’s apps or sharing more information with others who make use of the project. In this way, Glucosio merges both patient control over data and long-term self monitoring into a unified project.