Mark Lawler, Chris Carrigan, and colleagues describe how DATA-CAN’s co-created partnership has brought together patient representatives, healthcare professionals, and academic and industry researchers to facilitate responsible collection and use of big data
Mark Lawler, scientific director, DATA-CAN; Charlie Davie, hub director, DATA-CAN; Chris Carrigan, patient and public involvement and engagement (PPIE) lead, DATA-CAN (pictured left to right)
Large datasets that are responsibly and transparently handled offer great potential to accelerate discoveries that lead to better prevention, earlier diagnosis, and innovative treatments for many diseases—not least cancer. To reap the benefits, however, full transparency and responsible use of data is essential to allay public concerns about privacy and inappropriate use of personal health information.
DATA-CAN, the UKs Health Data Research Hub for Cancer, was created to break down silos between the many different sources of cancer intelligence, and instead collate them to drive better research and deliver greater individual and societal benefits. We defined a roadmap and key principles, agreed jointly with patients, health professionals, and academic/industry researcher partners, to maximise trust in the use of cancer data.1 2
With the emergence of covid-19 in January 2020, DATA-CAN rapidly pivoted from an overarching cancer data agenda to focus on addressing the pandemic’s effect on cancer services and patients with cancer, delivering valuable research findings that were recognised with a prestigious award. At the European level, this work has underpinned the European Cancer Organisation’s 7-point plan and Time To Act, campaigns that are working to mitigate the impact of covid-19 on patients with cancer and cancer services.
How DATA-CAN works with patients and the public
DATA-CAN works directly with patients, relatives, and carers to bring their voices to complex conversations about data and participation in research. DATA-CAN recognised from the outset that to be confident to voice their views and concerns at all levels, patient and public partners need to be empowered. Two voting PPIE members sit on DATA-CAN’s steering board, making them more influential than any other individual DATA-CAN partner (who each have a single representative). Additionally, two PPIE members sit on DATA-CAN’s management group, while DATA-CAN’s budget (around 10% for PPIE activities) and action plan reflect the key role and responsibility of its patient and public partners. Their empowerment has been promoted by asking an initial three PPIE members, chosen based on their expertise and previous working with DATA-CAN members, to set the agenda for the wider number of PPIE members (see below) who have been invited to participate in specific working groups within DATA-CAN’s different workstreams on areas such as covid-19, trusted research environments, commercial involvement, training, etc.
Our approach has been to trust our PPIE members to self-organise and lead lay involvement and we have found that they have delivered on this trust. No expectation is set on patients’ time commitment—we worked on the basis that the average commitment would be two to three hours per calendar month. In practice, some of the patients and carers commit significantly more time, depending on their work, voluntary, and family commitments. Remuneration is by honoraria, aligned with INVOLVE guidelines; travel and other expenses are also reimbursed.
Our PPIE group members review, approve, and have the right to veto any DATA-CAN proposal or contract. In one instance, our PPIE group objected to a particular commercial company’s proposed terms. They also successfully lobbied for the inclusion of equality, diversity, and inclusion assessments in proposals and a commitment to share clinical insights. Additionally, they challenged DATA-CAN’s leadership to commit to a project on triple-negative breast cancer, which we initially thought that we didn’t have time to deliver. Their passion and reasoned arguments on the project’s positive impact for patients persuaded us it was worth the risk.
Pete Wheatstone and Jacqui Gath, cancer survivors and respectively chair and member of the PPIE subgroup (pictured left to right)
DATA-CAN’s approach to PPIE is radically different from our previous experience as patient advocates. From the outset we were supported, invited, and empowered to participate in all discussions on the project’s direction and operation—rather than being asked to give a view post hoc without previous involvement in the project. 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.
We helped draft early versions of the initial successful grant application that led to DATA-CAN’s establishment and helped draw up its strategy. We also made suggestions to DATA-CAN’s partnership agreement that were adopted, and co-designed PPIE role specifications/PPIE group terms of reference. We sat on DATA-CAN interview panels for senior positions (such as chief operating officer).
PPIE members were selected via an “expression of interest,” advertised through a network of organisations/patient groups using newsletters, social media, and https://www.peopleinresearch.org, which included questions about what attracted them to the role and what they felt they could contribute. Once members were selected, we established informal ”discussion fora” to assess people’s ability to listen, speak, and collaborate proactively. Candidates were selected on these qualities and their life experience as patients or carers. We also selected people to represent diversity in terms of being a patient or carer; ethnicity; cancer type; age; geography; PPIE experience; work background. Lay members were drawn from all walks of life, commercial and public, from hauliers to hospital staff. A key responsibility of PPIE members is to harness widely held viewpoints and this was built into role specifications and evaluated at discussion fora. Through our 13 PPIE core members, we engage with a group of over 100 organisations, which is constantly growing in number and diversity.
PPIE members identified a range of themes where they felt that they, or other patients with cancer or cancer survivors, needed greater knowledge, including legal aspects, international data comparisons, research access to data, and commercial uses of data. To address this, we have run nearly 20 drop-in sessions online that take place fortnightly or two weekly and which cover each topic in turn, comprising a briefing pack, a presentation from an expert on the topic, and an open Q&A. All sessions are recorded, forming part of a learning resource for members. We also deliver one-on-one training where required.
During the pandemic, the inability to meet face to face has slowed the establishment of working relations and some PPIE members required support to obtain and use IT equipment. We therefore had to put in more time than expected (up to around 20-25 hours a month) to enable us to take on a range of activities including co-creating case studies, writing blogs, chairing webinars, and co-authoring scientific papers. But we have been pleased to put in this time, as the value of our input and the trust placed in us by our academic and research colleagues has been hugely rewarding. Our involvement in DATA-CAN reflects our interest in ensuring that data is used to improve human health; together, we bring over 30 years of experience in PPIE. Many DATA-CAN PPIE members want to contribute beyond providing their lived experience of cancer and its impacts on their lives.
James Peach, commercial director, DATA-CAN; Yoshiko Cook, DATA-CAN programme director for IQVIA; Arun Sujenthiran, clinical lead, Flatiron Health UK (pictured left to right)
The experience of care.data, General Practice Data for Planning and Research, and the concerns raised by patients and the public about commercial access to NHS data make it vital to involve patients in decisions about use of their data. Organisations using or seeking to use patient data also need to give people the full picture and respond to what they say.
To promote effective partnership in decision making in relation to commercial activities, DATA-CAN gives patient representatives appropriate training (see above) and payment for their time. Initiatives such as IQVIA’s Cancer Data Network, developed to support DATA-CAN, involved PPIE members early on so that they provided critical input to the network’s vision, technology, information governance, and privacy, holding IQVIA accountable to ensure they offer fair value to patients and NHS stakeholders.
Flatiron Health, a company that uses real world oncology data to improve patient outcomes, opened a dialogue with DATA-CAN through which PPIE members learnt about, provided feedback, and evaluated Flatiron’s “value propositions” on cancer data. Patient voices have shaped and strengthened Flatiron’s approach; and in direct response to patient feedback, Flatiron launched its own patient board, which is embedded in internal decisions and external communication activities.
- Time, effort, and appropriate remuneration is needed to embed meaningful patient and public involvement in health data research and its translation to practice and policy.
- Ensuring PPIE members are and feel empowered is important to ensure they contribute fully as equals.
- Involving patient representatives in discussions with commercial companies is key to improving the quality, transparency, and patient-centricity of research proposals/activities.
- Co-creation of projects by all stakeholders is essential to deliver fair value to patients, health services, academia, and industry.
We are currently reaching out to patient groups to create a “network of networks” and planning for cancer data “citizen juries” across the four UK nations. We have extended our “drop-in “programme to include patient members from the National Cancer Research Institute Consumer Forum and use MY data advisory group members to widen our base. We are also setting up a programme to promote “fairness” for underserved groups, particularly minority ethnic groups, in an effort to find a way to reduce the increased mortality and morbidity associated with covid-19 in men of certain ethnicities. We also seek to redress the gender imbalance, which has seen women disadvantaged by lack of data about their symptoms, response to drugs, and treatment side effects.
Pete Wheatstone, cancer survivor and chair, PPIE group, DATA-CAN
Jacqui Gath, cancer survivor and PPIE group member, DATA-CAN
Chris Carrigan, PPIE lead and chief operating officer, DATA-CAN
Geoff Hall, clinical lead, DATA-CAN
Yoshiko Cook, DATA-CAN programme director IQVIA; commercial lead, DATA-CAN
Arun Sujenthiran, medical director and clinical lead, Flatiron Health UK
James Peach, commercial director, DATA-CAN
Charlie Davie, hub director, DATA-CAN
Mark Lawler, scientific director, DATA-CAN
Pete Wheatstone is chair of DATA-CAN’s PPIE group and is also a member of DATA-CAN’s steering board. He is a bowel cancer survivor and has developed significant expertise in data during a 20 year IT career with IBM UK and his own IT companies. Jacqui Gath is a member of the DATA-CAN PPIE group. She is a breast cancer survivor. Jacqui’s previous role in IT at a major financial institution provides a good understanding of the principles and practice of data science. Chris Carrigan is PPIE lead and interim chief operating officer of DATA-CAN. He has a background in health data, informatics, cancer, and patient advocacy. Geoff Hall is the clinical lead for DATA-CAN, professor of digital health and cancer medicine at the University of Leeds, and an honorary consultant in medical oncology at the Leeds Cancer Centre. Yoshiko Cook is commercial lead for DATA-CAN and DATA-CAN programme director for IQVIA. Arun Sujenthiran is medical director and clinical lead, Flatiron Health UK. James Peach is the commercial director of DATA-CAN, with extensive experience advising public bodies, industry organisations, pharmaceutical companies, and startups on genomics and data in healthcare. Charlie Davie is DATA-CAN’s hub director. He is a practising consultant neurologist at the Royal Free London NHS Foundation Trust. Mark Lawler is DATA-CAN’s scientific director. He is associate pro-vice-chancellor, professor of digital health, and chair in translational cancer genomics at Queen’s University Belfast, UK.
We encourage organisations to adopt the Patient Data Citation, developed by the patient, relatives, and carer members of use MY data:
“This work uses data provided by patients and collected by the NHS as part of their care and support”
PW none; JG none; CC has received honoraria from Carnall Farrar unrelated to this work. GH has received honoraria from IQVIA to support their Cancer Data Network; YC is an employee of IQVIA; AS is an employee of Flatiron Health Inc, an independent subsidiary of Roche, and holds stock in Roche; JP has been a consultant to Health Data Research UK, Association of British Pharmaceutical Industry, Roche, Novartis, Sensyne Health, IQVIA, and Mendelian in the past three years and is a current director of Precision Strategy, Univ8 Genomics, and Human Centric Drug Discovery; CD has received an honorarium from Merck group for unrelated work; ML has received an unrestricted educational grant from Pfizer for research unrelated to this work. ML has received honoraria from Pfizer, EMD Serono, Roche, and Carnall Farrar unrelated to this work
We thank Joanna Clason, head of communications, DATA-CAN for her reading of the manuscript and for ensuring that public facing versions of the case studies are available on DATA-CAN’s website. We acknowledge the additional members of the DATA-CAN PPIE group (Alison Allam, Yvonne Adebola, Naomi Asantewa, John Barnes, Libby Cooper, Janet Frost, Margaret Grayson, Jo Gumbs, Steven Hill, Maisie McKenzie, and Sue Trant) and the remaining members of the DATA-CAN Management Group (Prabhu Arumugam, genomics lead, DATA-CAN; Amanda Begley, director of innovation and implementation, UCLPartners; Jessica Catone, project manager, DATA-CAN; Willie Hamilton, professor of primary care diagnostics, University of Exeter; Peter Hall, reader in cancer informatics and health economics, University of Edinburgh; Monica Jones, chief data officer, DATA-CAN; Kathy Pritchard-Jones, clinical lead, DATA-CAN; Yeen Tran, business and finance manager, DATA-CAN).
- Lawler M, Morris AD, Sullivan R, Birney E, Middleton A, Makaroff L, Knoppers BM, Horgan D, Eggermont A. A roadmap for restoring trust in Big Data. Lancet Oncol. 2018; 19:1014-1015.
- Lawler M, Haussler D, Siu LL, Haendel MA, McMurry JA, Knoppers BM, Chanock SJ, Calvo F, The BT, Walia G, Banks I, Yu PP, Staudt LM, Sawyers CL. Clinical Cancer Genome Task Team of the Global Alliance for Genomics and Health Sharing Clinical and Genomic Data on Cancer – The Need for Global Solutions. N Engl J Med. 2017; 376:2006-2009.
- Sud A, Torr B, Loveday C, Jones M, Broggio J, Scott S, Gronthoud F, Nicol DL, Garrett A, Jhanji S, Boyce SA, Williams M, Lyratzopoulos G, Barry C, Riboli E, Kipps E, Larkin Navani N, Swanton C, McFerran E, Muller DC, Lawler M, Houlston R, Turnbull C. COVID-19 Lockdown and its impact on the two-week wait pathway for suspected cancer. Lancet Oncol 2020; 21:1035-1044.
- Lai AG, Pasea L, Banerjee A, Hall G, Denaxas S, Chang WH, Katsoulis M, Williams B, Pillay D, Noursadeghi M, Linch D, Hughes D, Forster D, Turnbull C, Fitzpatrick NK, Boyd K, Foster GR, Enver T, DATA-CAN, Cooper M, Jones M, Pritchard-Jones K, Sullivan R, Davie C, Lawler M, Hemingway H. Estimated impact of the Covid-19 pandemic on cancer services and excess 1-year mortality in people with cancer and multimorbidity: near-real-time data on cancer care, cancer deaths and a population-based cohort study. BMJ Open. 2020;10:e043828.
- Ho KMA, Banerjee A, Lawler M, Rutter MD, Lovat LB Predicting endoscopic activity recovery in England after COVID-19: a national analysis. Lancet Gastroenterol Hepatol. 2021; 6:381-390