The use of digital technologies for delivering apps helping the user to have healthy habits while collecting their health-related data.
- Smart watches constantly collecting personal data, like heart rate and steps walked
- In Argentina, as in other countries, there is an application where citizens can upload information about vaccines, treatments and medicines received, surgeries and other health-related data. It fulfils the role of a personal folder keeping the citizen´s health-related data stored in a government cloud. All data is centrally stored and can be accessed, after an authentication process, through the Internet using a browser. If the user grants access, their medical records can be consulted by a doctor, hospital, or other authorized persons.
- Enabling personal control of health-related data and variables
- Having precise data about user´s habits
- Raising awareness about preventive medicine practices
Threats related to misuse and abuse
Data privacy – It is seen as positive for a person to be able to store medical records in a kind of government cloud and to be able to give access to such information to a third actor, in case of need. However, major concerns include who can access the data? How will the data be used? Which hospitals and health centers can access or are authorized and are able to access the data? Another major concern is related to the user’s decision about donating organs. Is this information private or public and who is authorized to access such information?
Data quality – Concerns refer to the completeness and quality of the stored data. In particular, who are responsible for uploading medical data for a patient? Who could be uploading medical data but not taking responsibility for it?
Data sharing – How will data stored centrally be shared with health institutions, either public or private? How to define and manage policies for sharing personal data about health, like allergies to some medicines, personal decision about authorizing blood transfusion, illnesses. Can private companies, like the user’s employer, access such data? Another example raising ethical concerns is when medical students or medical doctors take photos of a patient´s medical history or of the patients themselves and share them using social media with other students and professors discussing how to resolve a medical problem. On the positive side, it can help to quickly resolve the problem through expert opinions. On the negative side, new technologies like social media contribute to a quick and massive dissemination of information which can be sensitive or private to a person.
The following table summarizes ethical challenges associated with apps gathering health-related data.
|ID||CHALLENGE||RELATED TO *|
|C1||Ensuring that the stored data is shared only with authorized actors and with the data owner’s consent||Principle R|
|C2||Ensuring correct data management, e.g. that the collected personal data is securely stored, not altered and not used for commercial purposes||Principle R|
|C3||Ensuring the quality of the collected data||Principle R|
|C4||Ensuring that health-related collected data contributes to the production of accurate statistics and that said data is used by the relevant stakeholders||Principle R Principle O Principle A Principle M|
*See Principles for more information about principles.