Building informed consent – the importance of trust and transparency in safe health data sharing practices

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This post was written by 67Health in partnership with Data Saves Lives. 67Health is a healthcare communications agency. Data Saves Lives is a multi-stakeholder initiative with the aim of raising wider patient and public awareness about the importance of health data, improving understanding of how it is used and establishing a trusted environment for multi-stakeholder dialogue about responsible use and good practices across Europe.

The healthcare revolution has been shaped by the rapid development of health data-driven technology; tools that have played an instrumental role in building a better life for people all over the world. It has brought about undeniable benefits to healthcare, such as increasing accessibility to healthcare services and reducing health inequalities. In cancer prevention, health data-sharing could improve our chances of detecting cancer in patients at an early stage, prevent individuals from engaging in behaviours that increase the risk of developing cancer and alleviate the pressure placed on our already overburdened health systems. The rapid digitalisation of healthcare – signified by exponential and unprecedented data-accumulation – has the potential to drastically improve health outcomes, yet there are still many unknowns about the future of health data that have fostered fear in some people.

So, what can we do to build trust in digital health? The data-sharing movement is underpinned by good intentions; those which seek to benefit future generations to come, just as we have benefitted from the knowledge (or data) of those before us. In order to uphold these values and maintain the legitimacy of the data-sharing movement, we must ensure that certain ethical obligations are upheld. The industry must thus be guided by trust and transparency about what happens to our data once it has been donated and what it will be used for. It is only when we have the informed consent of data-sharers, that we can reach health data’s true, transformative potential.

Why is health data important?

According to Cancer Research UK, 1 in 2 people in the UK born after 1960 will be diagnosed with some form of cancer during their lifetime. To help researchers achieve a better understanding of which groups are most at risk of developing cancer, it is useful to understand the health characteristics of different groups within society. Collected health data could be grouped by a range of factors, such as broad characteristics like cancer incidence, or those which detail rates of survival or mortality. Beyond the common classifications of ethnicity and sex, donors could be classified on a range of other factors, such as: whether they live with a genetic condition, smoke cigarettes, or are gender non-conforming. Through analysing the health status and outcomes of individuals within these groups, healthcare professionals can identify those who are at high risk. This data plays a critical role in developing targeted and effective public health policies, which will promote better health outcomes.

Understanding consent

We’re Data Saves Lives, a multistakeholder initiative that was launched by the European Patients’ Forum (EPF) to increase awareness of the topics surrounding health data, establish a trusted environment for dialogue between the different actors involved in the health data-sharing journey. In our last blog post, we explored the role that health data can play in shaping the road to patient empowerment, so long as health data initiatives are conducted and managed in an ethical way. Through unpacking the importance of data security, this topic has opened up another vital topic in the discussion on health data – the principle of informed consent.

Gaining informed consent is critical to safe health data-sharing, as it legitimises the collection and sharing of an individual’s highly sensitive information. But what does it really mean for consent to be informed? According to this definition, informed consent is “the principle that requires clinicians to provide sufficient information to patients or potential research participants in order to render their consent lawful”. In the context of health data-sharing, let’s assume that it involves health data collection systems being transparent about how data will be stored, and the possibilities for its use in both the present and future, as well as information on how data donors can retract their consent.

Informed consent is a highly disputed and ambiguous concept. In the context of health data-sharing, this is because we assume that the consent we give is based on trust – that is, we trust those who are using our data to do good with it, and we don’t expect for it to be liberally distributed without our knowledge or permission. Therefore, the consent given “is not carte blanche”, but instead, conditional. It is only through acknowledging and respecting the conditions of this consent, that the ethics of the industry can be upheld.

This means that effective communication between the researcher and the donor-supported by transparency about the initiative – must be maintained. In the words of patient expert and health data advocate Alistair Kent, “The only way that we can truly maintain trust is by being clear about what data we are referring to and who it is being shared with.”

Yet, there are limitations for how much knowledge researchers can provide donors, as in some cases, they may not know how the data will be used or processed in the future. Opportunities for data use will change over time as science progresses, and with over 2.5 quintillion bytes of data created every single day (2018), it’s difficult to predict how and where this will all be stored. Therefore, consent must be broad enough to cover the possibilities of what will or may come in the future.

Building an equal world

When conducted in a safe and ethical way, health data sharing could be the key to unlocking a more equitable future for all. The more data we receive on certain population groups, the more we will see improvements in oncological care and prevention. Although the gains that can be achieved are undeniable, a grey area still exists regarding where this technology will take us in the future. What remains certain is that informed consent must always remain central to any health data-sharing initiatives.

The systems that uphold these processes must reflect these same values, otherwise, we risk undermining the legitimacy of our cause. As citizens, we must know how our data is being used, while considering the possibility that scientific advances may allow our data to be used in different ways for the greater good in the future. Therefore, we must build a system of consent based on trust and transparency, (and equally, severe penalties for misuse of data), to encourage safe health data-sharing and improve outcomes in cancer prevention and treatment.

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The views expressed are those of the author. Posting of the blog does not signify that the Cancer Prevention Group endorse those views or opinions.

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