By Harpreet Brrang, Information and Research Hub Manager, Children’s Liver Disease Foundation

Published: 13 March 2019

Supporting and promoting research into childhood liver disease is a vital part of Children’s Liver Disease Foundation’s work. We put patients and families at the heart of what we do and over the years they expressed a desire to have better engagement with research including regular communication with researchers and access to relevant research that is easy to understand.

They spoke and we listened: Last year we took the next step in our journey towards truly patient-centric research.

Taking action!

In October 2018 Children’s Liver Disease Foundation launched the CLDF Research Hub, a ‘one-stop shop’ for families and patients to engage with research into paediatric liver conditions.

Designed to facilitate two-way communication between those affected by a childhood liver condition and the research community the Research Hub...

• Works with patients, families and carers to set research priorities
• Supports the researcher community to find volunteers willing to take part in research
• Supports communication of the impact of childhood liver disease research to those impacted by the condition
• Provides patients and families with frequent updates on the latest developments in paediatric liver research, fostering greater understanding and engagement

How’s it going?

Since the Research Hub launched, we’ve had great feedback from our families. We’re currently recruiting parents and young people to become Research Hub members and facilitate the Patient and Public Involvement branch of the hub. It’s a work in progress and our members are continuing to help us shape and develop the hub. We couldn’t possibly do it without them!

Tips on creating your own research hub

• Make sure it’s simple and quick to sign-up to get involved in research.
• Try to use a variety of communication methods and opportunities for people to get involved i.e. face to face, online consultations, skype etc. to be inclusive of people’s geographical location.
• Ensure you’re aware of the relevant knowledge and best practice required to develop effective research communication skills and facilitate Patient and Public Involvement. Workshops and training promoted through AMRC, NIHR and INVOLVE are a good place to start.
• Involve Patient and Public Involvement members not only in research studies but also in the development of the research hub i.e. developing updates, webpages, news, blogs.
• Ask initial members to encourage others to sign up or to promote research updates and studies.
• Try to hold an annual networking session to keep members engaged and to assess its impact, effectiveness, and gain feedback and ideas for further development.

Thank you

We’re incredibly grateful to INVOLVE, AMRC and the paediatric liver conditions research community for the support we’ve received during the launch of the hub. As a small charity we’ve taken huge steps forward, and we’re hoping to make the hub as successful as possible over the coming months.