by Chloe Sweetnam, London Hub volunteer

This month we held our first event of the ’Healthtech Pub Evenings’ Series, on Ethics in Patient Engagement. Joined by Natalie Banner (Wellcome Trust) and Ele Harwich (Reform Think Tank), we discussed the issues around ethically handling data.

Patient engagement is a crucial component of a trustworthy data-driven healthcare system. It is important to ensure that patients are aware of the benefits of sharing data and that they are able to view who has accessed data about them and for what purpose. Academic researchers and industry are at risk of breaching General Data Protection Regulation (GDPR) if their approach to engaging with patients is not ethical.

Early in the evening, we discussed how citizen’s fears of sharing data have possibly stemmed from the weight of past mistakes such as care data or portrayal of data breaches in the media and recent events such as Cambridge Analytica. The conversation also highlighted how the process of obtaining consent can be laborious or presented in an impractical way for the user. For example, we discussed the saturation of consent statements currently experienced by web users, post-GDPR. Furthermore, it was suggested that not enough effort is made by national media to highlight the benefits of sharing data.

The level at which conversation about data sharing and obtaining consent from patients is had is hugely important. There seemed to be a consensus around the table that patients who are asked for permission to share data in person are more likely to opt-in, especially if they felt they could trust the requester. In addition, we discussed how the relationship a patient has with their clinician influences the decision to share data. It was also highlighted in the conversations that attitudes towards data sharing can be different for different age groups.

We also discussed the strong demand for patient-facing resources to educate citizens on the benefits of sharing data while protecting their anonymity. The work resources and initiative such as Use My Data or understanding patient data was highlighted. We agreed that patient focus groups are crucial to investigate how patients want to be contacted about data use. In holding these, we must prevent bias, and invite the wider public to the discussion. Until we ask patients how they feel about opt-out agreements, and if they would be happy delegating consent to a trusted doctor we will not know their opinion on the topic.