New challenges and opportunities for patients (organisations)
Digital Health, the use of apps, algorithms, and big data in healthcare could well change health care.
What exactly does this imply? That is not yet crystal clear. However, the first projects have been implemented so it is high time to think about the ethical values we should adhere to.
Just as with any innovation and development, it is necessary to make choices and consider options between different values. Examples include accessibility versus privacy and costs versus security. In addition, there are also conceptual questions to answer: what do we precisely mean with safety, control, and good care in digital health? There are many examples of digital health systems: for example digital healthfiles that give different doctors access to patient data from different locations. In addition, patients can add data themselves and view his medical reports. However, such an open design also makes it easy for unauthorized persons to gain access to the dossier. Starting in the design phase we must think carefully about possible consequences and respect ethical values in the design.
The choices we make and the reasons we make certain choices are ethically relevant. They determine the social impact of these technologies. Therefore, it is not desirable for developers to think of this technology on their own. Ethicists and patients should be involved much sooner and be more involved in the development of digital health. This enables us to better align the development with the values of end-users and to include these values, which includes more than just efficacy, safety and privacy, in the design process.
Platform versus Patient Organisation
Another development that has made the digitisation of care possible are so-called digital platforms. Here, patients exchange information with each other, have contact with fellow patients, or conduct self-examination. Think, for example, of a platform like PatientsLikeMe. This platform offers patients many new possibilities but also differs from the “traditional” patient associations. Where these “traditional” patient associations are mostly democratically organized and focussed on one (or a cluster of) disease(s), the new digital platforms have unclear decision-making processes and goals. It is, therefore, questionable whether these types of platforms, where individual patients come into contact with each other, can properly represent patients and patient interests with respect to health policy and medical scientific research.
Digitisation, as well as other developments, seems to have made the role of groups and collectives (such as patient associations) even more difficult. However, influence and participation in decision-making is stronger and more influential when people act collectively. Whether that can be achieved digitally, and if so, how, is one of the important issues that patients and patient associations will have to deal with in the coming years.
Author Karin Jongsma, Assistant Professor Bioethics, UMC Utrecht