Proposal for Welsh Hepatology Research Network

Welsh Hepatology Research Network (WHeRN)

 Background-  There has been discussion to form Hepatology Research Group since the establishment of South Wales Viral Hepatitis Clinical Network. The momentum gathered pace following the Research Away Day, pre-annual WAGE meeting on 13^thOctober 2010. At the breakout session it was decided to form a Hepatology Research Network in Wales to contribute to NIHR Hepatology Portfolio studies, to promote Wales plc to the big pharmaceutical companies and grant bodies, to generate hypothesis driven research within Wales, to continue with the epidemiological studies and to support good quality audits. The network shall develop, coordinate and publish high quality clinical and laboratory research and audit across Wales. All parties interested in research irrespective of background specialty or post are encouraged to participate in the network and attend meetings.

Aims & Objectives-

• To generate hypothesis driven research
• To support good quality audits
• To contribute to NIHR Hepatology Portfolio studies
• To promote Wales plc to the big pharmaceutical companies/funding organisations
• To train research fellows and clinical trainees

What type of Research are we looking to undertake ?-

The strengths in Wales are the established Viral Hepatitis Clinical Network and the availability of the expertise - epidemiological studies in liver diseases (Swansea), clinical and laboratory studies on viral hepatitis (Cardiff and Swansea), epidermiological studies on prevalence of blood borne virus among IV drug users (Public Health Wales) and alcohol usage among school chldren (Llantrisant). The weaknesses are lack of co-ordinated approach with units working in isolation and lack of funding.

A range of different types of audit & research activity will be encouraged. For example-

a) A comprehensive audit in the management of patients with viral hepatitis C as part of the 6-monthly report to WAG.

b) Local or Regional Ethics & R&D approved research studies/ trials where different hospitals/ units may wish to participate

c) NIHR Portfolio studies e.g. PBC genetic study, PSC genetic study and STOPAH.

d) Large scale multi-centre studies including UK wide and International studies where applicable where many units within the region may wish to participate

d) Audit or research related to training, service delivery as well as basic & translational studies.

e) Collaborative studies with the Cancer Network on liver and cholangiocarcinoma and with other specialties e.g. diabetes, paediatric, obesity, etc.

WHeRN would not wish to be involved in any standard local audits and it is entirely with individual local audit & project leads to decide whether they would like WHeRN to be involved in their project.

What are the potential advantages-?

-          Fostering greater collaborative links in research among units in Wales

-          Attracting resource into the region for audit & research activity

-          Publishing abstracts/papers at BSG, BASL etc  as well as in peer reviewed journals based on the above activity as a regional network

-          Standardised quality control for discussion of ideas and design of audits & research in a friendly & constructive atmosphere

-          Evidence base for Supporting Professional Activity for research & audit for all members

-          Extension of links with Industry to support audit & research activity

-          Training of Research Fellows and clinical trainees.

Who may wish to participate & what format will it take?

o       All clinicians whether of medical, surgical or nursing backgrounds, and trainees as well as other grades are encouraged to participate. It is not mandatory but it would be disappointing if any hospital/ unit declined to participate. It is envisaged that there will be one link person or representative from every unit but that participation in meetings will be open to all and not be restricted to the representative only. The representative shall act as a "link" to disseminate information to, and collate information/opinion from, their hospital.

o       Any ideas for audits & research remain with the originator of these who will be considered as the main investigator or project lead with other participants being collaborators/ co authors etc. depending on a case by case basis and will be agreed prior to commencing the study. The main investigator will be considered responsible for taking their idea forward to implementation and the network will help with logistics and collaboration as well as peer review of protocol, governance issues etc.

Proposed Structures for the Research Network-

-          Formation of a Research Network committee with Voting representation from each unit

-          Further representation may be sought from other bodies (for discussion)

-          This network will be under the umbrella of WAGE

-          The following posts shall be determined by vote:

o       Chair (NISCHR Hepatology Lead; Welsh Representative to NIHR)

o       Vice-chair

o       These posts shall be held for a period of 3 years (individuals can stand again for a maximum of one further 3 year period)

-          Hospital link representatives shall be nominated and decided after open invitation to all members in that institution.

o       These posts shall be held for a period of 3 years

Voting

• For matters which require a formal vote, the hospital link representatives shall hold voting rights. Where an individual cannot attend, a deputy (designated by that representative) should attend and can vote on their behalf. It is the responsibility of the link person to ensure that they have a mandate from their trust.

Network Meetings

• The group will meet every 3 months, with additional meetings if the need arises.
• Meeting invitees shall comprise:
  • Hospital link representatives. Where an individual cannot attend, a deputy (designated by that representative) should attend
  • Representatives from other relevant bodies as detailed above
  • In addition, there is an open invitation for any other person with an interest in hepatology research to attend. It is the responsibility of the hospital link representative to ensure other interested parties within that organisation are informed of these opportunities.
• Sample Draft agenda:
  • Apologies
  • Matters arising
  • Project updates
  • Audits/Trials in progress
  • Audits/Trials in development
  • New project proposals
  • AOB
  • Date, time, place of next meeting

Project groups

• Each project will have a nominated project lead
• Project groups will have separate project meetings, the frequency of which will be set/coordinated by the project lead
• Project groups will provide a research update at each Network meeting

Authorship of studies

• No study or abstract shall be submitted, in written or other form, bearing the Network's name until granted by WHeRN. When a timescale makes it impossible to discuss an abstract at the next WHeRN meeting, agreement may be reached by electronic communication between the authors and the WHeRN committee (link people), via the chair.
• All WHeRN-sanctioned studies will state in the authorship "on behalf of the Welsh Hepatology Research Network"
• Significant contributors will be listed as authors
• Minor contributors will also be acknowledged on the paper/presentation

Any disagreement over contribution will be decided by the project lead and project team, or where appropriate by vote at the next WHeRN meeting

All constructive comments & expressions of interest gratefully received- please contact Chin Lye Ch'ng - chinlye.ch'ng@wales.nhs.uk