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Participant Reflection – Dave: Paying for the Privilege of Data Usage?

Patients have a right to have their data stored in a way that protects it from investigation by anyone without the patients’ permission.

There is a vast amount of possibly very useful data stored on our personal devices, phones, Fitbit type devices and personal health monitors such as those used by diabetics to record their blood sugar readings.

There is a need for all those involved with healthcare be they healthcare professionals, pharmaceutical companies, NHS, private medicine or those involved in academic health research to be able to access relevant, current and comprehensive data.

This is an ongoing issue that has had numerous attempts to solve but none have proved successful. The CDIP (Civic Data Identity Partnership) project is trying to address this using a technique known as “Blockchain Technology”.

What is Blockchain Technology? Blockchain Technology refers to a system of data storage that can be likened to a database however there are fundamental differences. One of the most important aspects of Blockchain Technology is the security of the data in terms of the data being modified or altered. Each block in a blockchain can be thought of as a piece of data. This data is linked to the previous and next chain via labels. In order to change the data all links in the chain will need to be changed. Blockchain Technology allows the cryptocurrency “Bitcoin” to work.

If we accept that Blockchain Technology is secure in terms of not being alterable, what about in terms of it being accessed? This is the aspect of the equation that is most difficult to solve, and where CDIP hopes to make a difference. The aim of the project is to give the owners of the data, the patients, control over who sees what information is available about them.

If the access to the wealth of data stored in the multitude of diverse places can be made available there will be significant benefits. The first and most obvious is that any treatment you receive will happen with the supplier of the treatment having as complete a knowledge as possible of your medical history.

The analysis of this data can be used to identify issues and trends in health data that can improve the delivery of health systems in all areas. The use of the data for research, with permission or anonymised, will allow researchers a fuller understanding of the problems they are trying to solve.

From a personal perspective before I would consent to my data being accessed I would need assurances that the data was not being used to allow companies to profit without making significant payments for the privilege. I would like to note that I am not seeking payment for the owner of the data in terms of a patient but in terms of society in general, for example nay benefits derived from the use of this data could be shared with those who may benefit with little or no cost to the patient. I would need to know that I can choose who does and does not have access, and the level of access they have, to my data. There would need to be serious repercussions if companies or organisations breached the strict rules required.

The use of new technologies can be a frightening thing for many of us. We have little understanding of many of the apps and devices we use every day. There are laws to protect us but they are circumvented regularly sometimes by crooks and thieves but sometimes by so called respectable companies. Any app used to allow the sharing of my health data would need to have comprehensive security built in to it and be easy for an absolute novice to use, if this is not the case then people will avoid it.

In the first instance it would require patients (data owners) to actively engage in the data sharing process. In order for this to occur there needs to be some form of incentive. The obvious starting point for this is better healthcare for the patient. The next incentive can be the benefits that may be accrued by the relatives and/or descendants of the patient. There are those who are willing to support new initiatives through altruistic intentions and finally there are incentives in the form of prizes, vouchers or cash. Care needs to be taken when using the later of these incentives, people are not always honest when there is money at stake.

There is no doubt that this data needs to be shared. There have been numerous attempts over the years to do this but none have succeeded. I am sure that eventually it will be commonplace but I am not sure that it will happen any time soon.

Finally the group I was involved with for a discussion about this topic was quite diverse. The people involved were a good cross section of male, female young and old. Most of us agree that the idea is a good one.

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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