Lay Involvement in Knowledge Mobilisation (LINK)

The LINK Working Party was established at Keele University in early 2016 to enable and support meaningful Patient and Public Involvement and Engagement (PPIE) in the implementation of research evidence into real life healthcare practice. The group aims to facilitate the movement, or ‘mobilisation,’ of knowledge and evidence based innovations into wider use, for the benefit of the wider community, nationally and internationally.

The Research Institute for Primary Care and Health Sciences already has an existing Research User Group (RUG) which is made up of over 110 members, each with their own experiences of health conditions such as osteoarthritis, chronic pain, inflammatory arthritis, mental health illness and long term conditions. This “Expertise by Experience” helps to produce high quality, patient centred, relevant healthcare research. The LINK Working Party was established to take this research forward into the implementation phase.

The LINK provides a proactive forum for implementation issues in alignment with NIHR INVOLVE PPIE standards, promoting the patient narrative throughout the whole research journey and using networks, skills and experiences to support task and finish groups in the transfer of research findings into practice.

The LINK Working Party brings together members of the patient groups and organisations that it is trying to reach. It is made up of members of the RUG, along with patient representatives from CLAHRC West Midlands (Collaboration for Leadership in Applied Health Research and Care), members of local Patient and Public Involvement and Engagement groups (Haywood Users Group), an ethics specialist, people with links to charities and charitable organisations (e.g ARMA, Arthritis Research UK) healthcare staff and carers.

Members of the LINK Working Party

LINK Working Party Terms of Reference

Professional, personal and volunteering experiences are combined with knowledge of established networks and healthcare practice, and it is this combination of skills and connections which provides strong guidance to projects in the Research Institute for Primary Care Science’s Impact Accelerator Unit (responsible for implementation). Working with the NIHR Knowledge Mobilisation Research Fellow, this achieves a pro-active approach responding to projects and matching skill sets to implementation. As a result, the LINK Working Party now has an array of local, national and international connections with healthcare and patient organisations.

Who supports the LINK?

A core team of Knowledge Mobilisers from the Impact Accelerator Unit and a PPIE Knowledge Broker work alongside the LINK Working Party and LINK task and finish groups to ensure that there is a strong patient voice throughout the whole research and implementation cycle. The core team also work closely with the LINK Working Party to address any problems or barriers to implementation and to ensure that the high quality research produced at Keele is maintained throughout the process.

The LINK group is coordinated and co-chaired by a PPIE Knowledge Broker (Laura Campbell) and an Arthritis Research UK Professor of Musculoskeletal Therapies / NIHR Knowledge Mobilisation Research Fellow (Krysia Dziedzic), the lead academic is Implementation Fellow Dr. Sue Ashby.

We are looking for new members!

We are looking for patients, carers and members of the public who are passionate about improving healthcare and have an interest in proactively implementing the most up to date evidence based treatment. We are particularly interested in talking to anyone with experience of NHS groups such as PPGs, CCGs or AHSNs, or links to charities, community organisations and wider networks.

The LINK group meet bi-monthly for three hours and implementation task and finish groups meet according to project demand and deadlines. Meetings are held at the Research Institute for Primary Care Sciences, David Weatherall Building, Keele University, ST5 5BG. If you would like to join the LINK group, please contact LINK coordinator Laura Campbell for an informal chat – l.campbell@keele.ac.uk / 01782 734727

Examples of the work by the LINK Working Party

JIGSAW- E:

(Joint Implementation of osteoarthritis Guidelines Across Western Europe)

The JIGSAW-E implementation project is based on a Keele research study which determined a model GP consultation for osteoarthritis and co-produced patient information (the osteoarthritis guidebook). The guidebook and model consultation were piloted in GP practices across the West Midlands and are now being rolled out to further practices in the UK, Denmark, the Netherlands, Portugal and Norway.

Members of the RUG co-produced an osteoarthritis self-management Guidebook during the initial research study

Tasked with answering the question how do we make the public aware that this resource is available, members of the LINK group have since designed an eye catching, patient friendly, informative poster to promote the Guidebook and the JIGSAW-E service in primary care. Connections with local Patient Participation Groups (PPGs) were particularly useful in this piece of work. The poster, along with accompanying leaflets and GP waiting room screens,

is now in place in GP practices across the West Midlands.

Members of the LINK have joined the project’s international Community of Practice to share their own experiences of healthcare in the UK with other countries. They are Patient Champions who sit alongside Clinical Champions and members of the project team, tasked with championing the

project and bringing their own skills, links and knowledge to do this.

STarT Back:

(Stratified Care for Lower Back Pain)The STarT back implementation project is based on Keele research which found that by allocating back pain patients to different risk groups (stratifying them) they would receive more appropriate, cost effective and time saving treatment. Patients visiting their GP with lower back pain are asked 9 questions using the STarT Back tool, which then puts them into low, medium or high risk groups depending on their answers. Low risk patients receive information, advice and painkillers, medium risk patients receive this plus physiotherapy and high risk patients receive this plus emotional support. STarT Back was initially piloted in

the West Midlands and is now used in practices across the UK. It has now been included in the NICE guidelines.

A group made up of RUG members with low back pain and LINK members devised a patient facing back pain information leaflet, for patients in the UK and the USA. The leaflet is heavily influenced by patient experience and incorporates real life patient stories. The information is aimed at back pain patients who are stratified into the ‘low risk’ category using the STarT Back tool. Patients in the low risk group are given self management advise and good quality information.

Keele Pain Recorder app

The LINK group advised on routes for dissemination for the Keele Pain Recorder app and co-produced a poster advertising the app to fellow patients

Osteoarthritis of the hand

A patient information leaflet was co-produced with members of the LINK and the RUG based on evidence from the Keele SMOOTH study. This information specifically focusses on hand osteoarthritis and supplements the Keele osteoarthritis guidebook.

Further information

Contact:

Laura CampbellPatient and Public Involvement & Engagement Knowledge BrokerLINK Working Party CoordinatorArthritis Research UK Primary Care CentreResearch Institute for Primary Care & Health SciencesKeele UniversityTel: 01782 734727Email: l.campbell@keele.ac.uk

Acknowledgements

KD is part funded by the National Institute for Health and Care Research (NIHR) Collaborations for Leadership in Applied Research and Care West Midlands and by a Knowledge Mobilisation Research Fellowship (KMRF-2014-03-002) from the NIHR

For more information about the Research User Group visit: https://www.keele.ac.uk/ppie/

For more information about the Impact Accelerator Unit see: https://www.keele.ac.uk/pchs/implementingourresearch/