How can citizens be involved in health data reuse?
- Be informed, exert your rights: one fundamental pillar of UK and European law is to ensure that you are informed on how health data is being processed, by whom, for which purposes, under which safeguards, but also that you know and can exert your rights. Actors using your health information are bound by law to help you exercise your rights and to keep you informed. If they fail to do so, they can be subject to sanctions. You can access, rectify, erase, transfer from one service to another, and object to the use of your related health data.
- Give your opinion: the use of personal health information is not just a topic for experts in data science or artificial intelligence, it is also a public issue: your opinion and preferences matter and can be taken into account in a number of ways by the actors involved in the use of health data for purposes beyond your individual care. Examples include, polls, open debates, organization of workshops and individual discussions with citizens or their representatives etc.
- Participate in research projects: individual citizens, patients’ associations and civil society organizations can also be involved in or even initiate research projects to ensure that efforts are being made to advance on topics and issues which matter to them while respecting their values.
Your right to know about the reuse of your health data
The organisations and people using a part of your health information have an obligation to provide clear and understandable information on what they are doing, including how health data will be used and protected, for which purposes, who will have access to it and for how long they will be using it.
This information provision was enshrined by Law in order to make data users accountable to you: you know what is happening and can thus have a certain control over it.
There are a growing number of training and informative initiatives dedicated to citizens so that they can easily access this information and learn more about what health databases contain and how the use of health data works in practice. Want to see how these initiatives can look like? Visit Understanding Patient Data
Have your say about the reuse of your related health data
This access to information also enables you to exert your rights. Data protection laws guarantee that you can play a role in the reuse of your health data in several ways:
- You can check whether your health data is included in health databases which are used for research or other public interest projects. For example, if you have been treated in a hospital, you can check whether the information that you provided to the healthcare professionals that took care of you could be reused. This information is usually indicated on the information note provided to you when you arrived at the hospital, or on its website.
- You can request to access and, in some cases, transfer a copy of your personal health information (what is usually called “portability right”) from one actor to another. For example, when you want to change your health insurance, you can ask for the transfer of your personal information.
- You can ask to rectify the data related to you if you see that there is an error or mistake in your health record.
- You can express your consent or object to the use of your personal health information. Under UK and European law, actors using your related health data are committed using a specific legal basis for accessing and using your health data, except in some cases, for example when your personal information is de-identified and used for research projects (find more about de-identification here). In that situation, you can in most cases express your opposition to it. However, this right cannot apply to the projects necessary for reasons of public interest or which are mandatory according to law.
- You can ask to erase your personal health information. Once you express your request, this does not mean that your data will automatically or immediately be erased. For instance, some health records have to be archived (which means that they are not actively used anymore and are kept in a separate database for regulatory compliance or for future uses) during a timeframe enshrined into law and it is impossible to delete them before.
The actors using your health information are bound by law to help you to exercise your rights. Some institutions have a dedicated Data Protection Officer to assist you and you can find their contact details on the website or on the information notes provided by healthcare organisations. When there is not a dedicated Data Protection Officer, you can directly contact your healthcare provider or, if you participated in a research project, the person who was in charge of conducting it.
In the event that someone refuses to meet your demand or does not answer your request, you can always contact the national supervisory authority of your country, which is the independent organization tasked to ensure the protection and respects of your rights and freedom. In the UK, this is the National Data Guardian.
Citizens' involvement in decision-making
Beyond the rights that you have with regards to what is happening in the second life of your health data, your opinion can also be taken into account in a number of other ways.
Actors involved in the reuse of your health data have several tools at their disposal to ask for your opinion and listen to what you have to say. Find out more on these tools and discover some examples of citizens’ involvement mechanisms.
- Polls and questionnaires can enable you to provide your opinion on specific topics
- Online and offline open debates, like this current website for example, can contribute to the development of the public debate around what is happening to health data in its second life and to highlight what matters most to you and the other citizens.
Did you know that… During the research activities that we conducted to prepare this website, we discovered the example of a citizens’ jury conducted in 2016 in the United Kingdom to discuss with citizens the authorization of the use of health personal information for research purposes. During three days, citizens listened to and questioned various experts before deliberating among themselves and providing their final judgement on the issue. The results were then presented by members of the jury to national and local policymakers. Do you want to know more? The article presenting this project is available here.
Workshops or individual interviews
Some institutions and organisations are also organising workshops or individual interviews among members of the public and representatives from the civil society or patients’ associations. These formats can enable an in-depth discussion of specific topics or the co-development and identification of the rules that should be respected by actors wishing to use personal health information.
Did you know that… a research team from Canada developed an application to be used by citizens to manage, control and share health personal information. They organized focus groups with 26 people to test their solution and better understand how such health data management tools could be perceived. You want to know more? the results of their research is available here.
Representation in Ethics, Advisory and Data Access Committees
To ensure that patients' and citizens’ interests are being respected, organisations involved in the reuse of your health data can also include citizens and/or their representatives in decision making bodies involved in the regulation of access and use of personal health information.
Did you know that… the International Cancer Genome Consortium has an independent committee that monitors and advises requests from scientists to access health data. It includes experts, scientists and potential data users, but also citizens who have had cancer, and independent lay persons. Its role is to ensure that the potentially identifiable data under the responsibility of the Consortium is only used for public health objectives and by qualified researchers.
Citizens' participation in research projects
Research projects can involve and even be initiated by citizens, patients’ associations or civil society organizations to ensure that efforts are being made to advance topics and issues which matter to them, while respecting their values. Be it through providing information to researchers, participating in the collection and analysis of health information, or initiating and co-constructing the protocols of a research project, there are many ways in which you can be involved.
Did you know that…In 2016, in the USA, the Denver Museum of Citizens and Science initiated the “Genetics of Taste Lab Project”, which involved citizens in the collection, processing, sequencing, and analysis of genomic data voluntarily provided by museum’s visitors. Find out more here.
How should information be provided to citizens? Have your say on your rights and the role that citizens should play in the reuse of health data.
You can also check out...