Maisie McKenzie, explains how her work as a lay member of the National Data Guardian for Health and Social Care’s (NDG) advisory panel helps to further use MY data’s mission
The NHS is a lifeline that has touched all our lives in some way. It's been there for us in our times of vulnerability and sickness, delivering free medical care at the point of need. Following my time as a carer for family members, I am deeply grateful for its existence and choose to support its future. I do this by playing an active part in ensuring data the NHS holds can be used safely, ethically, and lawfully to improve patient care and outcomes and reduce health inequalities between specific communities. This is why I joined use MY data. I want to speak up for using data and be part of discussions about it. By advocating for the better, wider use of health data in research, innovation, and service planning, I hope to contribute to better healthcare outcomes for everyone.
The positive impacts of using data
Many people are unaware of how patient data is used beyond their own care, and there is a challenge in helping everyone understand the importance of this. Media coverage often focuses on negative incidents such as IT problems, data breaches, and the sharing of publicly held data with private companies without individuals’ consent. However, it fails to highlight the positive impacts of using data. It's natural for people to have reservations about data sharing when they feel it’s risky or if they are unsure about who is using it and why.
In reality, data use and IT have led to many positive changes, such as better digital records, advancements in disease research, access to services, and treatment development. These things improve healthcare every day. This is likely why public attitudes research on data sharing consistently reveals one key finding: once individuals are fully informed about the risks and benefits, the majority support the use of their data in research and service planning, as they can see the direct link between data use and improved healthcare outcomes.
Transparency and trust
The key to public support is transparency and ensuring that individuals are fully aware of how their data is used and for what purposes. When we know exactly how our data is being used and are clear about the processes that govern data sharing, it becomes easier to trust the system and support its use for public benefit. However, the NHS cannot speak at length to everyone in the country about healthcare data use. And so, how do we raise public awareness? This is a tricky question. There is no neat answer, as it isn’t the responsibility of one organisation to do this, given data use is a jigsaw with many pieces. On a personal level, I try to lend my voice and expertise to debates or discussions when they arise.
use MY data has a clearly stated mission: to be a trusted voice for patients and the public in all discussions and decisions about the use of our data for research and improving healthcare. I am able to further use MY data’s mission in my role as a lay member of the National Data Guardian for Health and Social Care’s (NDG) advisory panel. The NDG, Dr Nicola Byrne, is an independent advisor to the government, NHS England and the health and adult social care system in England at a national policy level. She, her office, and her advisory panel help ensure people’s confidential information is kept safe and used properly. We provide advice and expertise, offer encouragement, and deliver constructive critique.
I am proud to bring the patient's voice to this group. I have participated in significant discussions about the government’s health data policies and the wider plans for data and digital in England. As a panel, we advise incredibly interesting and high-profile data and digital programmes like the NHS Federated Data Platform and the NHS App. Membership of this panel allows me to represent the patient perspective to influential decision-makers in the healthcare data system at the heart of where data policy is being set for England.
The patient perspective involves more than just my own opinions and experiences. It is informed by the views and experiences of others as well, thanks to extensive public attitudes research on data use. This research consistently reveals the conditions that are important to people when it comes to the use of their data:
- Parties involved in handling, sharing, and using data must commit to transparency, openness, and authentic communications and engagement with the public
- When using data, there should be a demonstrable public benefit back to all or part of society or the NHS
- There should be strong safeguards against improper use
I consider it my responsibility to remind decision-makers about the importance of meeting these conditions, as doing so is crucial for upholding public trust. It is in everyone's best interest for data policies to be inclusive and for data programmes to deliver their vision for improved health. I am grateful for the opportunity to contribute to ensuring that data is used to enhance health for all.
July 2024
