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  1. Spotlight on Policy
27 March 2020updated 17 Jan 2024 6:16am

Unlocking the potential of personal data

Genomics and digital technologies offer unprecedented opportunities – and insurers should use them wisely.

By Dr Subashini M

Personalised medicine offers the promise of substantial opportunities to improve the population’s health, both through revolutionising the nature of healthcare and its provision, and by empowering individuals to take ownership for their health and wellbeing. It also presents opportunities to improve the end-to-end patient experience, from supporting interventions to preventing the development of disease, to earlier detection that enables more effective and often less invasive treatment.

Once a disease is detected, detailed characterisation of individuals and diseases enables specially tailored treatment and interventions. But personalised medicine also presents challenges – particularly to assessing insurance risk. A more thorough understanding of the current and future health risks of an individual can be useful. However, the democratisation of health beyond healthcare systems has profound implications for those parts of the insurance industry that provide cover.

Last month saw the publication of Foundations of Fairness. The report sets out the public’s sentiment in relation to the sharing of NHS data with third parties. The research, which was led by Understanding Patient Data, in association with the Ada Lovelace Institute, highlighted that although the public see the benefits of sharing data with research groups, charities and industry, there are concerns around accountability and the potential exploitation of the NHS.

The overall message was that the public will only support third parties using NHS-held health data when it helps drive benefits for the patient. This includes helping to improve detection of diseases like cancer and the development of new medicines.

Human beings are complex. While one individual may respond favourably to an intervention, outcomes will vary. Moreover, medical advances often come at a cost. Speed of adoption and access to treatment options can vary geographically and in different sectors. Outside of health systems, individuals will vary widely in their desire and ability to embrace these new opportunities for health monitoring and behaviour change.

Data is used in more ways than optimising care delivery. From an insurance perspective, it can be used to help inform product design and to predict, assess and mitigate risk. A recently announced partnership between Aviva and the University of Cambridge could help shed light on some of these issues. Aviva’s Data Ethics Forum commissioned the University’s PHG Foundation to analyse how these developments are likely to impact on the health insurance industry, through the lens of data ethics.

The Personalised Medicine and Insurance report provides a high-level exploration of the impact of personalised medicine on the insurance market. Through analysis of legal and regulatory requirements, professional guidance and relevant policy, it explores two complementary aspects of the obligations owed by insurers: those owed to society, and those owed to their customers – the insured.

The findings showed that, while personalised medical advances offer opportunities, they also pose challenges for the insurance industry. For example, using technologies and integrating diverse data sources might create new opportunities for data analysis to support the early detection of disease and disease management. However, these could potentially require insurers to analyse data for early signs of disease and report these findings to their customers, such as predictions of future ill health or the detection of early signs of disease, in a more granular and personalised manner than we currently do.

Moreover, digital technologies used for surveillance and early detection could increase the potential for anti-selection and the numbers of people who become uninsurable. The consequences of a greater proportion of the population becoming uninsurable is that personalisation is likely to shift the obligations of insurers to society.

Before considering the use of this type of medical data in risk assessment, insurers need to be able to confidently answer questions such as whether it is clear how the information would help assess the insurance risk and more importantly, how it will benefit the customer. As an insurer, will we be morally or legally obligated to share that information? If so, do we have the right people to have those conversations with our customers, and will the customer be equipped to deal with what they are about to hear? Are the right support services in place?

On a broader scale, insurers need to understand whether the insight gleaned from the use of data analytics drives the right behaviours. The use of artificial intelligence has already shown us that if used incorrectly, there is a danger that data can lead to prejudice.

When it comes to health data, public and private sectors are not mutually exclusive. However, as the Foundations of Fairness report shows, there is still some way to go to build patient confidence to share their data beyond the NHS.

As new external data streams become available, all relevant stakeholders need to work together to build consumer confidence and agree best practice approaches. The potential consequences need to be fully understood and decisions focused on how ethical it is to use the information.

Above all, consumers must understand how their data is being used and have the confidence that the recipient is acting with integrity. Only then will mutual trust build and the systemic bias of some socioeconomic groups opting out of data-sharing begin to be addressed.

As an industry, it is paramount that any data strategy enables us to stay true to our insurance fundamentals. It needs to support inclusivity and aid positive health outcomes for the individual, not make insurance less accessible.

It is about realising the benefits of technology but treading carefully to ensure that we do not exacerbate inequality. And, moving from purely mitigating risks to becoming more purpose based, using data insights to help inform and protect as many people as possible. Decisions should be predicated by codes of data ethics that support the changing role of insurers, using obligations of that role as a guide and driving positive customer, commercial and societal outcomes.

Dr Subashini M is associate medical director of Aviva UK.

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