Last year Transform Health and its partners launched the My Data Our Health campaign with a week of action starting on 23 January to celebrate Data Privacy Day on 28 January. Since then thousands of people have participated in the campaign and joined the conversation on health data governance, and in particular what it means to us individuals.
During last year’s week of action we launched a survey (in French and in English) to assess people’s knowledge and understanding of health data governance. Over 2000 people responded. Two thirds of respondents did not know who was collecting their data or for what purpose it was being used, and two thirds did not feel in control of their health data. When asked if people were concerned that others may be using their health data without their consent, nearly 50% (47.5%) felt concerned. When asked if they would feel any different if they knew researchers were using this data for public good purposes, almost 42% said this would not change how they felt about the situation. These findings are interesting and point to the need for more informed public debates on this issue. People are increasingly concerned about the way data is collected and used, without their knowledge and sometimes only their passive, and frequently uninformed consent (consent forms are usually long legalistic and often written in small print).
To complement the information from the survey and to engage people more meaningfully in the campaign, we launched the Where’sMyData? action. We invited people to go to their health centre (or register online) and request their electronic health data. To date, over 500 people have visited their health centres to request their electronic health data. Their experiences are revealing; over 50% of participants were denied their data. Of those who received their data, over 33% said the health providers were initially unsure how to respond to the request and asked participants to return at a later date, while 13.5% of respondents were asked to pay a fee to access their health data. Of those who received their health data, over 45% found this to be incomplete. Over 48% of respondents were concerned about how well protected their health data is as a result of their experience.
Why is this important?
While laws on data protection and standard operating procedures on the management and use of data may exist across many contexts, people’s lived experience suggests there is a lack of knowledge and understanding among healthcare providers as to people’s rights and their responsibilities in terms of personal health data. Evidence also points to a lack of knowledge and understanding among people about their rights and ownership in relation to their health data. This is creating a trust deficit between patients and healthcare providers. This could have severe implications on access to healthcare. Marginalised and excluded populations may feel reluctant to access healthcare services if they feel their data is not safe and secure and may be used in the future against them. Unless the law is clarified and clear health data governance structures set up, we risk not leveraging the full benefits of the digital transformation of health systems, and creating greater divisions and exclusions.
In Uganda for example the 2019 Data Protection and Privacy Act sets out the responsibilities of Data Collectors but does not say anything about the rights of the data subjects or the responsibilities of people storing, managing and using this data, for example healthcare staff. The Act also states that a Data Collector may disclose personal data on other people “For the prevention, detection, investigation, prosecution or punishment of an offence or breach of law (Article 7.2.iii). From a healthcare perspective this creates a worrying legal context that potentially erodes trust between patient and healthcare providers. Following the passage of the 2023 Homosexuality Act healthcare providers may be compelled to report patients of the LGBTQIA+ community. Article 14 of the 2023 Homosexuality Act – Duty to Report Acts of Homosexuality – states that “A person who knows or has reasonable suspicion that a person has committed or intends to commit the offence of homosexuality or any offence under this Act, shall report the matter to the police for appropriate action.” Not doing so risks a prison sentence of up to five years or a fine of 100 million Shillings. Healthcare staff are therefore in a situation of having to report patients they suspect. Knowing this may prevent many members of the LGBTQIA+ community from accessing healthcare services.
A clear set of global minimum standards on health data governance that establishes the rights and responsibilities of patients and healthcare workers, as well as researchers and innovators, that could be domesticated nationally, is therefore needed. This would create the necessary trust architecture to enable the effective use of data for public good and accelerate the digital transformation of health systems to deliver on universal health coverage (UHC) by 2030.
As the example from Uganda highlights, we are not quite there yet when it comes to health data governance. We need more people to get behind this campaign to ensure governments sign up to the Health Data Governance Principles, and support the development of a set of minimum standards underpinned by the Principles, through a resolution at the World Health Assembly.
This year we would like to encourage as many people as possible to take part in the My Data Our Health campaign, to find out how much control you have over your own health data by taking the Where’s MyData? Action and then fill in the survey. We encourage organisations to write to their Ministry of Health (using these letters as a template in [EN / FR / SP]) calling on them to endorse the Health Data Governance Principles and to sponsor or support a resolution on health data governance at the World Health Assembly in May 2024. In a digital age we are more than flesh and blood, we are also data subjects, let’s ensure our data is upholding universal standards on human rights and protecting us from misuse and mis representation, whilst helping all of us to stay healthy!