The focus group I attended was the first time that I ever engaged in academic research. The whole process was interesting and explained very well. This has made me interested in doing more focus groups in the future. I found the topic interesting as well and extremely relevant to society at the moment, even beyond the platform itself and more generally about how much data organisations already have on individuals.
Personally, if I were to have trust in the platform it would be best to be approved by a well-known and trusted institution such as the NHS, which I believe I, and many others would find reassuring, due to the NHS being loved throughout society. However, this could be any institution with public confidence. Furthermore, I would want to be provided with evidence that the data was secure and that those who could see the data were heavily limited and that there were significant legal protections around my data. This personally, would give me more confidence in trusting the platform. Perhaps in this sense the platform could be independently scrutinised by experts in data security.
Apps like ‘Patient Access’ already have huge amounts of our personal medical data, so in this sense if there was a benefit to me sharing health data by new technologies, I would do so, as long as it was demonstrably secure, provided me with personal benefits and was delivered by a trusted and well recognised institution.
Financially incentivising people to share their health data is an interesting idea. Personally, I believe that people should have the choice over their data and be able to sell it if they wish. This would give people the ability to make some money from their own personal information. However, there would have to be protections in place for vulnerable people and those in financial struggles, as people should understand what they are doing and not feel like they have to sell their data to get by. But overall, I believe it would be good for individual patients and the organisation and would incentivise me massively to use a platform like this.
I think platforms like this can have a massive impact on improving health and getting crucial access to medical services. For example, in the focus group, using citizen data to connect with pharmaceutical companies developing innovative treatments, is interesting and could help people find treatments that they can’t get now and help pharmaceutical companies develop lifesaving treatments.
Also, when looking at the example of sharing health data with GP’s selectively when having appointments. This could definitely lead to better health outcomes and quicker diagnosis potentially saving lives. This is something I believe could improve health outcomes in the future, but must come with adequate protections, including a patient’s right to remove data and preventing others from seeing this data.
I have mixed opinions about the health Certificate scenario. COVID-19 vaccination certificates could be brilliant at getting people back doing the things they want and living freely. But it’s also could prevent equal access to services for people that perhaps cannot have the vaccine for health reasons. Maybe this could be built into the platform. I also believe adequate legal rights for those who can’t have the vaccine through no personal choice, would need to be developed so that there is no discrimination. Overall, I think it’s a good idea but must come with legal protections for patients.
I think that platforms such as this are going to be the future for health, which will probably improve people’s lives and health. However, I feel that governments and organisations developing these solutions need to provide adequate protection of data so that people can have confidence that it is completely confidential and not going to be compromised.
With regards to using blockchain technology, I think people in general would perhaps need more knowledge on how it works and how it’s secure so that they have confidence in it. I also believe people will need to be able to withdraw their data at any time if they wish to do so. If blockchain is considerably more secure than other technologies at sharing data, I cannot see many drawbacks of using this method. If it is more secure than alternatives, then hopefully patients and society will have more confidence in the safety of their personal data.
Overall, I think the ideas in the focus group were all good and interesting ideas, that can hopefully improve everyone’s lives.
Disclaimer: The views, information, or opinions expressed within the participant’s reflections blog series are solely those of the individuals involved. Views do not necessarily represent those of the University of Manchester, Lancaster University or any other individuals associated with the CDIP project.