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Participant Reflections – Sarah: Control & Access to Health Data

As part of our public engagement, we invited participants of the phase 1 focus group discussions to reflect upon their experiences of taking part in the CDIP platform research project. Participants were sent copies of the focus group presentation and anonymised transcripts of any group discussions that they took part in as a reminder of the aims of the project. Encouraging participants to reflect on their own individual views after taking part in group discussions has enabled the research team to gather very valuable additional data. These reflections will be used to inform the next phase of the co-research process. Participants names have been changed in order to protect their identity.


What do you think might be some of the major benefits and drawbacks for individual patients, or society more generally, in using blockchain technology to share personal health data? 

Some of the benefits to using blockchain technology for patients would be the ability for such a system to use the stored data to track signs of early disease. It seems to me that apart from annual health checks and some regular scans for people with certain conditions and for things like breast cancer and other cancers and health checks that happen for people over 50, most early disease capture relies upon the patient being alert to their own health. Some people will be more alert to their health changes than others.  Recording health information on a platform can start to give an overall picture of the health of a patient.  GP’s don’t generally give out health advice in my experience and just respond to conditions that are presented to them instead. This type of platform may bring about a system whereby GP’s can use this information to give predictions of early disease and health in order to move towards starting to give patients advice at appointments.  It could even be used to give an annual report of a patient’s health so that a patient can review that data with their GP to make changes to their lifestyle. I think this could save lives and NHS money in the long run by finding early problems and diseases. This would also help GP’s plan their delivery to patients too. For example, one surgery may find the predominance of a disease in their patients and decide to offer a clinic within their opening hours to manage that disease. I myself use health tracking apps and find them very useful. But one thing that I think is important is that they must be simple enough for everyone to use and free of errors otherwise the temptation is to delete an app or stop using it as much. Apps that I like that track health data are those that make entering data simple with no confusion on how to use an app, where you can easily review your data over a period of time with a graph for example. If patients can both see the benefits and get some positive benefit from a blockchain platform and from entering their data, it will work well. I like the idea that scientists and researchers can use this information to benefit research. Up to now if a patient wanted to take part in research, they would either need to be referred to a project or find the project them self through an internet search.  I like the idea of choosing which people and groups who can access the data. For example, groups such primary care trusts, GP’s, and Hospital specialists. Also, organisations that offer localised treatment planning based upon the prevalence of disease too. For example, smoking cessation clinics and chemists that may offer these services.

Drawbacks I can see with sharing data would be regarding the elderly who are not tech savvy who would miss out on the benefits of daily reporting of their health for example and the benefits of doing this to track their long-term health to manage or prevent disease. I can’t see a way around this without creating more work for NHS staff for example by using an annual health review with a GP. I am conscious that they are overstretched.  A family member could enter the data. But for people like my elderly family member who lives alone a few miles away from me there would not be anyone to record data for her regularly as we don’t see each other every day. It is usually once or twice a week. So, it would only benefit those living in the same household who could enter the data on the persons behalf. If all else fails perhaps a localised clinic can be held for elderly patients to attend where staff can gather their data if they can’t enter their data them self.

What would be important for you to know before having enough trust in the platform to use it in the future?

I would need to feel confident that the platform is robust and free of errors as far as possible. There is nothing more annoying than an application that freezes, is complicated to use or that is difficult to enter data into or that does not give any benefit from entering data ultimately.  I would like to see who made the platform for example and who it had been approved by.

How do you feel about sharing health data via new technologies that may be unfamiliar to you?

I am personally open to new technologies and sharing data if it benefits me and other patients, the NHS and scientists. The big challenge would be to encourage the population as a whole to be open to new technologies and to sharing their health data. It is all to the good as far as I am concerned.

My only concern in the main about sharing health data via new technology would be the security of certain sensitive health information and how it would be used. So, a clear statement that is easy to understand would be essential for the patient to agree to would be a priority. Perhaps a separate system of data entry platform that is optional for the health user patient could be built for those wishing to participate in research or donate their health data to scientific research projects where choices of projects could be given.

What are your thoughts about incentivising people (financially or otherwise) to share their health data?

I think using incentives could definitely be used for research projects that are difficult to recruit participants. Otherwise, these projects may not be able to attract funding to recruit and do the research perhaps if recruitment is difficult in that area of research. So I am not against giving financial incentives. But I think it needs to be carefully managed to avoid a situation where there are lots of people are only participating with those projects that offer incentives. It could create an unequal arena for those projects which may have less funding to spare to incentivise people. But I think on the whole if patients can see the benefits of sharing their health data, and if they can be confident in trusting a platform and they understand how their data is being used, people are more likely to share and feel positive about sharing their data regardless of any incentive.

 What do you think might be possible to do in terms of sharing health data in the future?

I think the most valuable part of having a platform that can accept patient health data like this would be to enable GP’s access to it so that they can see the possibility of spotting early diseases. This will save NHS money long-term by saving on the cost of treatment by capturing diseases early. High up on the list is sharing data to scientific research projects to enable better disease management and patient care and outcomes. I think it would be possible and highly beneficial to allow GP’s and primary care trusts access to this data to plan treatments for highly prevalent diseases within their area. So allowing them to choose which data they would like to access. A system could be designed in the first place to have a disease management section that would allow this specific disease management data to be interpreted.

What was it like for you to take part in online group discussions about sharing health data?

It was a new experience taking part in an online discussion as I had not done it before, so I was a little nervous. But everything went smoothly and I believe a zoom meeting for research purposes is such a beneficial tool during a pandemic where people need to be separate.  This method also saves the participants travel time too which is an added bonus.

Prior to this research project I took part in other research projects where meetings took place in person in a room at a University or a neutral place like a rented space.

I liked and enjoyed this new format. It was organised, timed and planned very well, and all the participants were made to feel comfortable about speaking and giving their views. Everyone was helped with the new technology to enter the zoom meeting and I felt it was a beneficial meeting for all using this method. My only hitch was that I could not quite see everyone on the screen at the same time which may have been because of the number of participants or my screen size perhaps, but it was so well organised that I was always able to hear everyone individually easily at all times. Everything went well as planned.

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.

Published in Participant Reflections


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