Say what you do. Do what you say
“When you need treatment you will be very glad that those that went before allowed their data to be used for research…”
a use MY data member
All too often the patient voice is lost from the healthcare policy debate. When it comes to health and care data about patients it is particularly important that their voices are heard. Not least because it often includes sensitive information about patients, that can be essential for medical improvements. No matter what patient data are being used for—whether it is monitoring and improving the performance of NHS providers or by commercial organisations for research and development—it is essential that patients are engaged, and their perspectives heard.
The use MY data movement has found a significant number of patients want their data to be used more and are currently frustrated by the barriers to it being used for medical advancements. This is an opinion that often feels drowned out by the clamour over the risks to patient safety and privacy, and general distrust of non-NHS organisations accessing NHS data.
Whilst these are incredibly important considerations, the fears should not outweigh potential gains. Patients need to be able to willingly share their data, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously.
A large part of this can be solved by increased transparency – put more simply: “Say what you do. Do what you say”. Transparency is key to building public awareness—of the different perspectives in the health data debate but also more broadly of what can be achieved through using patient data—and public trust.
Open, honest and transparent dialogue can increase common understanding between patients and organisations which hold data about them. A use MY data workshop about commercial uses of patient data brought pharmaceutical companies, commercial companies, data privacy organisations and NHS data agencies into a joint conversation with patient advocates. This conversation has had a manifested impact: several of the commercial organisations who took part in the workshop have now increased the role of the patient voice within their organisations, establishing new panels and oversight groups. There has been a distinct change in emphasis towards far greater transparency and co-production of patient-friendly information materials.
Another means for increasing transparency is increasing awareness about how patient data is used. The Patient Data Citation developed by use MY data members is one such method; the citation can be applied wherever patient data is used. The advantages are twofold: it highlights the health benefits that can be gained from using patient data, as well as tracing these back to patients. This is best encapsulated by a use MY data member:
“I want more of my data to be captured, particularly my outcomes data, so that my data can be used by researchers to…help others who are going to come along behind me.”
This is increasingly a world where research and learning will be utilising the opportunities that ‘big data’ brings to develop new insights to drive care and outcomes for us all. But as more of these opportunities become apparent, much more work is needed to develop a wider, more inclusive dialogue involving heterogenous groups of people, some in favour, some who are not and many in between. The only solution to this is far greater transparency by those who use, or seek to use data. And far more inclusion of those whose data we seek to use.
use MY data is a movement of patients, carers and relatives – our vision is of every patient willingly giving their data to help others, knowing that effective safeguards to maintain the confidentiality and anonymity of their data are applied consistently, transparently and rigorously