Doing things differently – how patient involvement is increasing trust in the use of data
DATA-CAN, the UK’s Health Data Research Hub for Cancer, whose Scientific Director is Professor Mark Lawler, Professor of Digital Health at Queen’s University Belfast, is taking a novel approach to cancer data.
This approach aims to increase trust in the responsible collection and use of cancer data. DATA-CAN’s innovative way of working, which places the patient front and centre in all their data activities and decisions, is today published in the Partnerships in Practice section of the highly respected British Medical Journal (BMJ).
Large health datasets, responsibly and transparently handled, offer great potential to improve patients’ lives through discovery of new treatments and improving earlier diagnosis. However, in order to ensure the best use of data for the benefit of patients, full transparency and responsible use of data is essential, to allay public concerns about privacy and inappropriate use of personal health information.
DATA-CAN works directly with patients, relatives, carers and the public to bring their distinct voices to complex conversations about data and participation in research.
Mark Lawler, Professor of Digital Health at Queen’s University Belfast, Scientific Director of DATA-CAN and Member of the Scientific Committee of the European Cancer Patient Coalition - Europe’s largest cancer patient advocacy group, said: "The patient voice must be heard. We recognised from the outset that to be confident to voice their views and concerns, patient and public partners must be empowered. This is why there are two voting patient members on DATA-CAN’s steering board, making them more influential than any other individual DATA-CAN partner. Two patient members also sit on the management group and on specific project groups, again making sure they are central in all the key decisions in the use of data. Patients are our north star – we follow their lead."
Patient and public involvement and engagement (PPIE) members review, approve and can veto any DATA-CAN proposal or contract. In one situation, PPIE members challenged DATA-CAN’s leadership to commit to a project on triple-negative breast cancer that at first seemed too complex; passion and reasoned arguments on the project’s positive impact for patients persuaded DATA-CAN that it was worth the risk.
A significant factor in building that confidence is the training programme that DATA-CAN has put in place for patients and the public with an interest in patient data. The training provided to patient and public group members encourages effective partnerships in decision-making, especially in relation to any commercial activities.
Pete Wheatstone, cancer survivor and Chair of the DATA-CAN PPIE group, said: “DATA-CAN’s approach is radically different from other experiences as a patient advocate. From the outset we were supported, invited and empowered to participate in all discussions on the project's direction and operation. This required courage from DATA-CAN and confidence in the contributions and decisions of our PPIE group. It has also required bravery, determination and hard work from us to judiciously and democratically represent the interests of all patients.”
Jacqui Gath, cancer survivor and Member of the DATA-CAN PPIE group, added: “Because DATA-CAN has committed time and effort to hearing the patient voice, we do likewise with no regrets. I know we are making a difference, adding value and ultimately benefitting patients. Vetoing a project is ‘no big deal’. Why? Because not only are we empowered, we feel empowered to make decisions.”
Dr Charlie Davie, Director of DATA-CAN and consultant neurologist at The Royal Free, said: “Two years ago, I believed that creating a meaningful dialogue with patients was only possible through face-to-face interaction. However, being part of DATA-CAN has taught me that remote interaction with members of our PPIE group is an essential method to allow connectivity with people from across the UK. Adopting this approach early on has enabled DATA-CAN’s PPIE work to thrive and ensure diverse insights and opinions are represented.”