The User Interface
Workstrand 3 of UK-PBC has at its heart the goal of changing how patients with PBC, and ultimately related autoimmune liver diseases, are managed in the UK. What this fundamentally means is that we move to wider recognition of the clinical meaning of treatment non-response as it applies to PBC as a disease, and its associated symptoms.
To make this recognition mean something new for patients, we need to think about what the nature of care for patients with PBC should look like in the next 25 years and how we can deliver this. We are therefore working with patients, clinicians, Industry and health economists in Workstrand 3 to make progress towards more personalised and stratified approaches to treatment of PBC.
The goal of Workstrand 3 is to bring together the success and strength of the national cohort to deliver clinical trials of relevance to patients (disease and symptom focused), economic modelling of the costs associated with PBC treatment, patient education and integrative care plan advancement.
It will do so by working across the consortium with leads in Birmingham (Hirschfield) and Newcastle (Jones) in particular. Workstrand 3 also has a particular interest in the interactions needed for success in working with Industry and Patients, something that Prof Hirschfield and Prof Jones have championed for some time. To reach that goal Workstrand 3 represents a natural point of access for all UK-PBC enquiries about utilising the resource. Examples include new Industry interest in treatment or patients and clinicians seeking more information about PBC, or wishing to help in PBC research.
To make UK-PBC truly successful we want to build a strong and unique platform for research in PBC, which ultimately contributes to related autoimmune liver diseases, and chronic disease management generally. The value of the resource will therefore be multiplied by successful partnerships which may arise in many foreseen, and unforeseen, ways. The UK-PBC website is planned to act as a ready access point to the consortium, and will facilitate close working between all the workstrands, meaning we will deliver a streamlined approach to making new concepts real for patients.
Specific examples of Workstrand 3 related activities ongoing already include:
- Industry pipeline of new trials including trials for patients previously excluded e.g. high risk late stage disease
- PBC Guidelines for the UK with involvement of clinicians, nurses, patients
- UK-PBC website with close collaboration with the PBC Foundation
- Health Economics of PBC
- Clinical care pathway development
Workstrand 3 welcomes the interaction of patients, clinicians and interested parties and Gideon Hirschfield encourages direct contact with him for any questions, comments, or suggestions. For Industry partners, the expertise in clinical trial design and delivery within UK-PBC is managed by this workstrand, and can be directly accessed in a ready manner, and one which comes with a track record of success and clear outputs.