- People with long-term health conditions record their health data on a daily basis, but most of this information is never shared.
- Self-generated health and lifestyle data has the potential to help better understand multiple conditions and to transform care.
- The "health care revolution" will only be possible if we begin to understand how to encourage the effective sharing of health data.
Self-generated health and lifestyle data covers a wide range of data types from a variety of different sources. This may include handwritten records about your sleeping patterns, diet, or use of medication. It may also include data about your heart activity, blood sugar levels or physical activity, collected 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 others can allow patients to receive additional support from health care professionals and peer communities, as well as to enhance their understanding of their own health.
The growing popularity of self-generated health and lifestyle data provides an opportunity for public health professionals to get their hands on large quantities of data that can be used to better understand countless conditions. However, there are numerous barriers to the effective sharing of health and lifestyle data, including concerns about trust, identity, privacy, and security, as well as experiences of stigma. If the potential benefits are to be realised, we need to understand more about the experiences of those living with long-term health conditions, and the barriers to sharing health data.
Researchers at Northumbria University, as part of the EPSRC-funded INTUIT project, recently investigated the potential barriers and facilitators 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 living with long-term health conditions. They found that three-quarters of those living with long-term health conditions record health data on a daily basis; however, the majority of this data is never shared. Two-thirds of those with long-term health conditions reported never or rarely sharing health data with others. This suggests a missed opportunity for public health professionals to learn valuable lessons from data collected on a daily basis. These lessons could be vital for providing key insights into numerous health conditions and for improving care at a population level.
So why don’t people share their health data? Concerns about trust, identity, privacy, and security have the greatest negative impact on sharing. These concerns are considered to be highly important for people living with long-term health conditions when deciding whether or not to share their data with others. People tend to be most concerned about the security of their private data and the potential for the unwanted disclosure of sensitive information to third parties. In the U.K., people’s security concerns are also likely to be affected by widespread reporting of incidents such as the 2017 WannaCry attack on the NHS and the recent public outcry in response to the new central NHS Digital database.
People are also fearful that unwanted disclosure may lead to experiences of stigma and harm their social relationships. Of those living with a long-term health condition, almost two-thirds reported having experienced stigma as a consequence of their health. When considering the different risks associated with sharing their data, social risk was considered to be the most severe. Many people feel that sharing their data may cause those around them to act differently towards them. The potential for humiliation or social embarrassment can deter people from sharing their data with others, highlighting the need for people to feel that their data is securely protected.
A deeper understanding of the concerns raised by those living with long-term health conditions may help to 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, greater efforts are needed to address people’s security concerns and to understand the social risks that may be preventing them from sharing their data. Technology providers and public health organisations may look to enhance and promote the security features of their digital platforms and provide users with greater control to choose how their data is shared.