In today’s overstretched NHS, industry has an opportunity to help enhance healthcare systems and outcomes through effective collaboration. An excellent example is the inflammatory bowel disease (IBD) Registry Industry Working Group (IWG) that has just marked its first anniversary.
The IBD Registry – run and managed by the British Society of Gastroenterology (BSG) – was set up to capture data from every IBD team in the UK and combine it with routinely collected hospital statistics for audit, improved service delivery and research. The Registry is also the vehicle for the national biological therapies audit and quality improvement programme, included in the NHS England Quality Accounts List.
Running the Registry with a small, largely part-time, team is a challenge. Hard-pressed IBD teams need a certain level of support to get up and running with the Registry, not least because continuous data entry at the point of care is a significant culture change. Limited resources – both human and financial – constrain the amount of support the Registry team can give to sites across the UK and in early 2016, uptake was behind target.
Industry support
The Registry has been part-funded by the BSG, ad hoc industry grants, and this is being supplemented by Trust subscriptions to the biological therapies audit and in due course fees for running real-world evidence research studies. In 2016 the team looked to industry to help in a different way: moving beyond sponsorship to find practical ways to help IBD teams to take part.
The BSG invited applications from senior people in companies working in IBD to form a joint working group. The IWG was formed in June 2016, comprising the Registry Executive team and five representatives from industry. Current industry members are from Tillotts, Dr Falk, Takeda, Janssen and Pharmacosmos. These individuals bring a range of complementary expertise, including health outcomes, marketing, business development, compliance and market access.
Competing companies left commercial rivalries at the door to commit to a project that was beneficial not only to themselves, but also to the NHS and patients. This collaboration continues to go above and beyond individual needs, with a focus on helping to accelerate data collection. Competing companies have left commercial rivalries at the door to commit to a project that is beneficial to themselves, the NHS and patients, and there is a shared objective to ensure the Registry becomes fully embedded in NHS practice.
One year on: achievements and reflections
In its first 12 months, the IWG has developed a three-year framework for Registry funding, created a data entry grant fund for IBD teams (with contributions from nine companies: AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor), and planned a field support programme to extend the reach of the Registry team and help to embed data collection in local practice. Individual IWG members have also supported extra initiatives: Tillotts has provided MSL time to help the Registry develop its infrastructure for research projects.
Although being part of the IWG is a considerable commitment, its members consider it a priority. Participation has enhanced industry appreciation of the pressures, challenges and lack of resources for healthcare professionals working in IBD.
What else can be achieved?
As the Registry gains traction, more data is contributed and the data set becomes increasingly valuable. Locally, the data gives health economies a clearer view of their IBD population and resource usage (e.g. hospital admissions), and this improves service planning and delivery. Many patients already report having a better experience, since clinicians have access to up-to-date clinical information. In time, researchers will be able to see national trends in IBD care and outcomes, use the data set for valuable research and give real-world evidence to the NHS and industry.
Leaving commercial considerations at the door has provided a forum to meet a range of Registry and BSG objectives and give industry partners valuable insight beyond their brand. The effects of IBD on patients and their families can be devastating.
Populating the IBD Registry is a major step towards improving IBD service provision, knowledge and understanding. The ultimate aim is to have a sufficiently large pool of data to be able to see how to keep patients in remission longer using specific interventions. If more complete data sets were available for this chronic and debilitating condition, outcomes might ultimately improve.
The IBD Registry IWG has proved a practical and successful model for joint working, and one that helps patients and clinical teams as well as industry. Members are extremely proud of their achievements so far, especially the fact that companies in tough competition for a relatively small market have worked so well together with the ultimate goal of improving patient care. Registry core funding is now on a more secure footing, and 22 IBD teams have benefited from a data entry grant.
However, we urge more companies working in IBD to get involved. The IWG provides regular feedback to the other IBD companies at the biannual Registry Industry Forum, but it aims to represent the views of all IBD companies, and their input will only make its work better. Populating the IBD Registry is a major step towards improving IBD knowledge, understanding and service provision. We’d highly recommend that companies working in other disease areas follow this joint working example – combining industry and NHS expertise and resources make for an effective and cost-effective way of achieving common goals.
Richard Gardner is chief executive of the British Society of Gastroenterology, which runs and manages the IBD Registry, and Jeremy Thorpe is general manager of Tillotts Pharma UK and a member of the IBD Registry Industry Working Group. For more information about the BSG, the IBD Registry or the IWG, please contact claire@dovetailstrategies.com
