Patients and Data: Changing roles and relationships

by David Gilbert

August 25, 2015

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Patients and Data: Changing roles and relationships

Article by David Gilbert and Mark Doughty, October 2014

“And don’t criticize
What you can’t understand
Your sons and your daughters
Are beyond your command”

(Bob Dylan, The Times They Are A-Changin’)

Data and changes in roles and relationships

We live in a world awash with data. From decisions about the unit price per sheet of toilet paper, to price plans for smart phones, every day we navigate through a data and information minefield. Whatever one’s attitude – whether you welcome more data, or feel threatened by it, the data-age is here to stay. And it is changing our relationship to services.

In healthcare, the availability of more data can help change the role of patients vis-a-vis relationships with health professionals. A friend researched the risks and benefits of various treatments, which hospital delivered best quality care and which surgeon she could trust. She made those decisions alongside her loved ones and general practitioner (GP). Another with a long term condition said granting his trust to a GP is based on professional willingness to share and discuss data honestly and in the context of his life and values. Patients becoming knowledgeable about data make healthcare more of an equal relationship – or it should do.

The wide availability of data is also enabling patients, users, and carers to change their relationships with each other. Peer-to-peer support, a growing phenomenon both on-and off-line is about people sharing their own ‘data’, derived from their own sense of what works, their own lives, and their own healthcare experiences. Meanwhile, people having access to their own medical records is becoming part of mainstream healthcare – changing relationships between patients and the health system and enabling professionals and patients to have different sorts of conversations − though not without a fight from some professionals who still regard themselves as data custodians.

With the advent of digital technologies, patients are generating and using their own personal data, effectively changing intrapersonal relationships (i.e. with themselves). The world of the ‘quantified self’ reveals a world of people using wearable devices to provide feedback on physiological processes so as to be more in control of the way they live and behave.

From individual decision-making to strategic decision-making

More widely available data is changing patient and professional roles and relationships at a micro-level, but not yet at the macro-level. If we are being ‘trusted’ and encouraged to make choices at an individual level, surely we have the right to be part of decisions on the way data is being generated and used.

In terms of clinical data information, much of it is still secret. Think Enron or GSK in India or, any number of multi-national scandals. The UK government promotes the benefits of allowing corporate interests and researchers access to data held about patients by GPs, but has not involved patients or patient groups in the development of that policy. While more people use wearable devices and share data online, they have little say in how that data is used and by whom. Some online patient communities base their busi­ness model on selling aggregated data. Yet, how many decisions in the pharmaceutical world on data transparency have been based on meaningful involvement of patients and citizens?

The system can’t have it both ways: professionals and health regulatory agencies want patients to‘grow up’ and take responsibility for individual decisions about data in health and healthcare. But the very organisations seem reluctant to grant them an adult say in decision-making.

Patient Leaders

Meanwhile, patients are doing it for themselves. Many are becoming ‘Patient Leaders’ – influencing change at system level, by modelling the type of relationships they want to see between patients and professionals. The patients are more than ‘representatives’ granted ‘permission’ to sit at the professional table. Patients are creating their own roles and opportunities and are developing the skills needed to change the nature of health­care itself. And they threaten the status quo.

Patient Leaders go the extra mile and take the way they manage their own lives and health to a strategic level. An example is Michael Seres, one of the first bowel trans­plant patients in the UK. Based on his own experiences and needs, Michael invented The Ostom-i™ Alert sensor − a discrete device that alerts patients as to how full their ostomy pouches are so that they can decide if and when to empty them. The device sends Bluetooth alerts to a mobile phone app device telling the user their pouch is filling up. Denise Stephens, who has multiple sclerosis, created Enabled By Design – a user-led community that promotes and supports user-designed solutions for assisted living. Michael and Denise are patient innovators.

Oli Anderson lives with renal disease, provides coaching and peer to peer support for other (renal and non-renal patients) and promotes shared decision-making locally. Alison Cameron, a mental health service user, leads co-production work across the UK health system. Nicola Kingston has a son with diabetes; she promotes patient-cen­tred research and recently co-led work on peer-led education for people with diabetes. Trevor Fernandes had a heart attack and is now working alongside professionals to help change the way inspections happen in the UK. Anya de Iongh has Postural Orthostatic Tachycardia Syndrome (POTS) and uses her expertise to help the design and delivery of clinical training.

These are just some of the people involved in discussions and decisions about data far beyond their own care and treatment – sharing data with the system to support pa­tients, helping organisations change practice-based on what data matters to patients, working with data to change how inspections happen, and educating professionals on the importance of patient-generated data.

For this to happen, patient leaders require meaningful opportunities to input into joint working initiatives, learning and support – in particular with regard to influencing the system through building better relationships – to be valued for their time and expertise, and also need ways to support each other, e.g. through networks of mutual support.

Beyond this, the future of healthcare needs us – all of us together – to move towards different solutions. In the data realm, the questions around data transparency, gener­ation, ownership, and control require patients and citizens to have an equal say at a strategic level. After all, whose data is it anyway?


This article was written by David Gilbert and Mark Doughty and has been taken from ‘Transparency of Clinical Trial Data’ Report on the 2nd European Medical Writers Association Symposium at

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