Why people don’t share their health data

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Self-generated health and lifestyle data includes a wide range of data types from a variety of different sources. This may include handwritten records of your sleeping habits, diet, or medications you are taking. It may also contain data about your heart activity, blood sugar levels or physical activity recorded by your smartwatch, smartphone or other device. Sharing self-generated health and lifestyle data with others has been linked to better health outcomes. This is because sharing with other patients can allow them to gain additional support from healthcare professionals and peer communities and improve their understanding of their own health.

The growing popularity of self-generated health and lifestyle data offers public health professionals the opportunity to get their hands on large amounts of data that can be used to better understand myriad medical conditions. However, there are numerous barriers to the effective sharing of health and lifestyle data, including concerns about trust, identity, privacy and security, and experiences of stigma. If the potential benefits are to be realized, we need to learn more about the experiences of people with long-term illnesses and the barriers to sharing health data.

Recent Research

Researchers from Northumbria University, as part of the EPSRC-funded INTUIT project, recently examined the potential barriers and enablers to the effective sharing of health and lifestyle data. The research team conducted a comprehensive review of existing research, in-depth interviews, and a large-scale survey of people with long-term health problems. They found that three quarters of people living with long-term health problems record health data on a daily basis, but the majority of that data is never shared. Two-thirds of people with long-term health problems said they never or rarely share their health information with others. This indicates a missed opportunity for healthcare professionals to learn valuable lessons from the data collected on a daily basis. These lessons could be critical to gaining important insights into many health conditions and improving population-level care.

Why aren’t people sharing their health data? Trust, identity, privacy, and security concerns have the greatest negative impact on sharing. These concerns are considered very important for people living with long-term health conditions when deciding whether or not to share their data with others. People are usually most concerned about the security of their private information and the possibility of unwanted disclosure of sensitive information to third parties. In the UK, people’s safety concerns are also likely to be influenced by widespread reports of incidents such as the WannaCry attack on the NHS in 2017 and the recent public outcry in response to the new central NHS Digital database.

People also fear that unwanted disclosure could lead to stigma and affect their social relationships. Of those living with a long-term health condition, nearly two-thirds reported experiencing stigma because of their health. When considering the various risks associated with sharing their data, social risk was considered the most serious. Many people feel that sharing their data can make those around them behave differently towards them. The potential for humiliation or social embarrassment can discourage people from sharing their data with others and underscores the need for people to feel their data is securely protected.

I’m looking forward to

A deeper understanding of the concerns of people living with long-term health conditions can help facilitate effective data-sharing practices in the future. If public health professionals are to benefit from the growing popularity of self-generated health and lifestyle data, more effort is needed to address people’s security concerns and understand the social risks that may prevent people from sharing their data. Technology providers and public health organizations can seek to improve and promote the security features of their digital platforms and give users greater control over how their data is shared.

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