Industry Working Group
The IBD Registry’s Industry Working Group (IWG) was set up to complement the Registry team’s skills and build a framework for effective collaboration between the Registry and pharma companies working within IBD.
In its first 12 months, the IWG has developed a 3-year plan 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 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. Last year the group was featured in Pharma Times, with the member reflecting on its achievements to date.
The current industry members are: Caroline Turnbull (Dr Falk), Eric Grossat (MEDiadd), Glynn Owen (Takeda), Janet Addison (Biogen), Jeremy Thorpe (Tillotts) and Toby Kent (Janssen). The other members of the group are Stuart Bloom, Fraser Cummings, Claire Munro and Liz Dobson.
Membership operates on a rolling basis, with opportunities for new members to join each year. If you’d like to join the group, please contact firstname.lastname@example.org
Janet is Principal Scientist and Global Head of Clinical Research, Biosimilars, at Biogen Idec Ltd. She has over 20 years’ practical experience in clinical research, including a decade spent in the observational study environment within pharma, designing and executing clinical research studies and interpreting data from research projects.
She is passionate about the potential of real world evidence to help inform and change clinical practice, with the over-arching aim being to benefit patients; being part of the IBD Registry’s industry working group is a practical way of contributing to reducing the burden of IBD, in healthcare and for patients.
Eric has launched his own project, HOPES, which aims to support multi-stakeholder initiatives that will close the gap between the evolution of knowledge to improve outcomes and its application in the daily clinic. Prior to this Eric spent 27 years in the pharmaceutical industry working several roles including Vice President of Global Marketing, Specialty Product Director and Humira Gastro General Manager. Currently in remission, Eric suffered from IBD in his early 20’s and again in his 30’s. This has motivated him to improve standards of care in daily practice and one way he can do this is through the IBD Registry IWG.
Toby is a pharmaceutical professional with 15 years’ experience spanning pre-clinical drug-discovery, global development and medical affairs from which he brings a wealth of experience in non-clinical, clinical and real-world health-outcomes research. Prior to joining industry, he completed a PhD in biochemistry and post-doctoral studies in genomics.
Toby is the UK Medical Advisor for Gastroenterology at Janssen, a company of Johnson & Johnson. His strong interests in the development of prospective observational studies and experience in building successful collaborations between industry and academia will help to further strengthen the IBD Registry.
Involved from the start of the IWG, Jeremy Thorpe is the Co-Chair of the IWG and full time Managing Director of Tillotts Pharma UK Ltd. He describes himself as a businessman who has enjoyed working in pharmaceuticals for almost 30 years. During this time he has focused on and developed a passion for gastroenterology.
His varied roles have included sales and marketing with proton pump inhibitors, leading a NICE single technology appraisal for a novel treatment for chronic constipation, and for the most recent six years, treatments for ulcerative colitis and Crohn’s disease. Hobbies and interests outside of work include collecting fine wines, cooking and to keep fit, playing tennis.
Having spent a career working within the NHS and the pharmaceutical industry, Caroline has worked across a range of therapy areas, demonstrating a real commitment to improving healthcare and outcomes for both individual patients and the health economy as a whole.
Her current role involves leading the marketing strategy for Dr Falk Pharma, with previous experience ranging across sales management, marketing, brand leadership and strategic roles in a number of leading pharmaceutical companies.
She has been a member of the IWG since its inception and joined because she wanted to help shape and drive recognition of the IBD Registry in helping to improve care of patients with ulcerative colitis and Crohn’s Disease.
Industry Working Group Projects
Data Entry Grants
To reach its full potential, the IBD Registry relies on busy clinical teams entering patient data electronically. Early adopters are already starting to see local benefits from their data, and you can read about their experience here. For many sites, however, starting to enter data as part of routine clinical practice feels like a daunting challenge. The IBD Registry’s IWG created a scheme to help these teams get started.
Grants from industry sponsors (thank you AbbVie, Allergan, Dr Falk, Janssen, Napp, Pfizer, Takeda, Tillotts and Vifor) contributed to a central Data Entry Grant fund held by the IBD Registry. Hospitals were invited to apply for a grant of up to £2,000 to fund additional staff time for data entry. A formal contract was agreed and the grant paid in two stages against agreed milestones.
The value of the IBD Registry is in having a rich data set to drive quality improvement and inform best practice. By supporting teams to increase the volume of data entered, the data entry grants have allowed the Registry to take a step towards realising this ambition. The scheme also helped hospital teams to participate in the IBD biologics audit, since the additional hours could be used to input biologics patient data. Northampton General shared their experience with us and you can read it here.
The IBD Registry set up a Field Support Programme (FSP) with members of its Industry Working Group (IWG) in 2017. The aim of the project was to supplement the lean IBD Registry team with non-promotional field based personnel from pharmaceutical companies. Individuals from the 5 participating companies (Dr Falk, Janssen, Pharmcosmos, Takeda and Tillotts) were trained by the IBD Registry team.
The field team were given resources for hospitals covering how sites can participate and the benefits of doing so. The programme launched in Autumn 2017, and clinicians have shown an interest; appreciating the IBD Registry reaching out to them with this resource. To date we have supported 11 trusts through this programme. The programme has supported sites to:
- Choose the data entry system that suits their needs
- Secure internal funding for a data entry system
- Engage IT
- Understand the IBD Registry and what they can get out of it
The future of collaboration between industry and the NHS.
What has the Industry Working Group achieved?
What can we learn from the Industry Working Group?
|Industry Prospectus||Download here|
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