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Case study: IBD Registry Roadshow

Identifying an effective way to reach and engage busy clinical teams

Published: 13 Jan 2018

IBD Roadshow

Client: British Society of Gastroenterology

Agency: Dovetail

Campaign: IBD Registry Roadshow

Timescale: N/A

A quick look

By the end of 2016, there were 80 live sites (up from eight sites in November 2015) and 22,758 patient records (versus 8,037). Industry partners found the project gave them deep insights into the challenges facing their key customers and stakeholders. Individuals from the four partner companies became the founding members of an IBD Registry Industry Working Group that collaborates with the Registry team on initiatives to accelerate Registry participation.

Challenge

Inflammatory Bowel Disease (IBD) is a chronic condition that can’t be cured and is on the increase for reasons that aren’t clear. Around 300,000 people in the UK are affected but there’s no definitive data on numbers and little information about how IBD affects people over the time. The British Society of Gastroenterology (BSG) set up the IBD Registry to improve patient care and outcomes by collecting and studying long-term clinical data from IBD teams in the UK.

It was originally planned to run alongside a successful national IBD Audit programme managed by the Royal College of Physicians (RCP). In 2015 NHS England announced it was pulling the Audit funding and recommended that future audits be incorporated into the IBD Registry.

This presented many challenges: adapting the Registry to accommodate the Audit caused delays and the move from annual snapshot audit to continuous data collection at the point of care is a significant culture change for busy teams. With no NHS mandate or funding, Registry success depends entirely on gastroenterologists being sufficiently convinced of its
value to them and their patients.

In November 2015 Registry uptake was low, with just eight sites and around 8,000 patient records. Clinicians were confused about the project and the challenge was to identify an effective way to reach and engage busy clinical teams and find the resources to do it.

Solution

Dovetail planned a roadshow in order to better understand IBD clinicians, listen to their concerns and co-design local solutions.We adopted a collaborative approach due to limited resources and also to harness the common aims of the stakeholders: the BSG and RCP recognised the IBD Registry as an opportunity to create a world-leading resource for quality improvement; patient organisation Crohn’s and Colitis UK was keen to represent the patient view, and pharma companies Janssen, Shire, Takeda and Tillotts wanted to help improve patient care and outcomes by supporting Registry uptake. They also saw working in partnership as an opportunity to understand their clinical customers better.

The roadshow focused on explaining the transition from Audit to Registry, and also on local benefits. The agenda included case studies from early adopters, and interactive workshops to help teams identify local barriers and plan their own solutions. In a break with tradition, we asked the industry partners not to bring promotional materials, but to participate as delegates and contribute to the problem-solving discussions.

Results

We held six meetings, attended by 140 clinicians. Delegates valued the regional approach and the combination  of input from national experts with facilitated planning sessions.

The IBD Registry team benefited from getting closer to users: feedback from the frontline gave it a much better understanding of local challenges. This fed into better support by, for example, making information on the Registry website clearer and developing a business case template that teams could download.

Client verdict

Dr Stuart Bloom, IBD Registry Chair:

“This was an innovative and practical experience, an excellent opportunity to communicate Registry expectations and hear first-hand from clinical teams what they wanted and the potential limiting factors in entering data. It was particularly good to get input from teams as a whole rather than individual members. This was one of the most useful and productive meetings that I have experienced and a format that I will seek to replicate.”

David Barker, Crohn’s and Colitis UK CEO:

“We were delighted to be involved in this important initiative. The voice, views and opinions of patients are critical ingredients in driving quality improvement. The forums ensured effective two-way communication and further embedded the powerful partnership of clinicians and patients working together.”

For the Dovetail team, this was a brilliant opportunity to put into practice our founding principles of transforming healthcare through effective collaboration and making patient-focused work with integrity and purpose that everyone involved can feel really proud of.

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