CLDF Research Hub Harpreet Brrang Information Research Hub

CLDF Research Hub Harpreet Brrang Information & Research Hub Manager

Overview of the CLDF Research Hub Role of the Research Hub: • Work with patients, families and carers to set research priorities and support to improve the quality of research proposals (by becoming a research hub member) • Support the researcher community to find volunteers willing to take part in research • Support to communicate the impact of childhood liver disease research to those impacted by the condition • Provide patients and families with frequent updates on the latest developments in paediatric liver research, fostering greater understanding and engagement

CLDF Research Hub One stop shop for feeding into and communicating information about what is happening in the field of research Public/Families/Patients Researchers Key point or quote

One stop shop for research: Webpage Key point or quote

Background • CLDF welcomed Dr Dalia Belsha to its offices at the start of March 2016 to hold a focus group with 7 parents of children with various liver conditions • CLDF supported the recruitment and logistics of the day • Dr Belsha used the focus group to strengthen a future research proposal involving gastrointestinal bleeding with the attendees providing highly useful feedback on the study design and practical issues related to undertaking the study • CLDF found that research was often communicated in a way that was not easily understood by those not in the field

Why involve patients in research? • Patient and Public Involvement (PPI) improves the quality and credibility of the research project; improved success with funders as patients are at the heart of the project • Ensures research focuses on what is important to the patient; patients are true experts • Ensures research is conducted in a way that is best for patients e. g. through study design and methodology • Provides those living with or affected by a liver condition a method to contribute to ongoing research “Tell me and I forget, teach me and I may remember, involve me and I learn. ” - Benjamin Franklin

How can you be involved? Participate in a study by answering surveys, questionnaires etc Communicate and promote research being undertaken within your networks and campaigning for implementation (where appropriate) Reviewing lay documents Evaluate each opportunity at the end of the study or your involvement of the study to feedback to CLDF and researchers Shape research priorities, methodology and design through focus groups Feedback and suggestions on how the research hub should facilitate these partnerships. Key point or quote Future development of the role as a trainer of other hub members Promote the CLDF Research Hub in your networks and areas

Example: • Initiate and create new ideas for research Identifying and prioritising research Example: • Evaluate the impact of patient and public involvement Evaluating impact Set research priorities Example: • Support to develop strategies and materials to take research findings into practice Research Hub Members Implementing Designing and shaping research plans Examples: • Advise on publicising findings to patient groups and public • Support to interpret findings Evaluate and disseminate outcomes Undertaking research and facilitating participation • Contribute to design and methods • Develop lay materials and information for research participants • Support to develop questionnaires and tools to be used in the study

Support • Ongoing contact with Information and Research Hub Manager • Newsletters and updates in regards to the Research Hub and what is happening in the research community • Updates about the research studies you have been involved in • Networking days

Become a research hub member Register your interest • Further information on our website page: research-hub@childliverdisease. org • Complete member interest form • Short informal telephone interview and induction training (face to face or induction pack provided depending on availability)

Any Questions? “The important thing is not to stop questioning. Curiosity has its own reason for existing. ” - Albert Einstein