Priority Setting
Katherine has a longstanding interest in and passion for research priority setting. She is an acknowledged expert in the facilitation of dialogue-based consensus development processes involving patients, carers, clinicians and researchers. Always fair and focused, she has an international reputation for creating empowering spaces where multi-stakeholder groups can come together on an equal footing and collaborate meaningfully and effectively, including those whose voices may not easily be heard.
From 2008 to 2023, Katherine was Senior Adviser to the James Lind Alliance (JLA), a National Institute for Health and Care Research initiative that brings patients, carers and clinicians together to set priorities for research. During her time with the JLA, Katherine co-wrote and edited the JLA Guidebook, and facilitated over 65 Priority Setting Partnerships internationally, on a diverse range of health and social care topics and diagnostic areas. She was a key player in enabling the JLA to become the internationally acclaimed approach that it is today.
Drawing on established methods such as Delphi and Nominal Group Technique, Katherine’s experience has been sought and applied in many different settings to develop priority setting processes tailored to the individual needs of the client and their content.
Click here to listen to Katherine talk about her work in a BMJ podcast, and click here for a National Institute for Health Research podcast.
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Testimonials
Katherine supported the Crohn’s & Colitis Australia priority setting project adapting to the COVID driven online environment with great skill and agility. Katherine’s ability to effectively co-chair meetings of consumers and health professionals ensured constructive decision making and progress within an enjoyable partnership environment. Her advice and support on technical aspects of the research priority setting process was of great benefit to the project staff and committee ensuring the learnings of JLA brought great value to this inflammatory bowel disease project. Feedback from workshop participants, and committee members highlighted Katherine’s clarity and expertise in facilitating to ensure an equitable range of voices are heard. I highly recommend Katherine to who has brought value to our prioritising process beyond our expectations.
Wayne Massuger, Head - Quality, Research and Support Programs, Crohn’s & Colitis Australia
I have watched Katherine facilitating discussions involving mixed groups of patients and clinicians, with diverse interests and complex and sometimes conflicting concerns. She offers the calm and focussed style and the warm and inclusive approach which are needed to achieve consensus about shared priorities in these circumstances. Her work for the James Lind Alliance has always been delivered to a very high standard, and her contributions to the development of this unique initiative have been invaluable.
Sir Iain Chalmers, Founder, Cochrane Collaboration
Working with Katherine is a delight. She helps you guide through a complex process with many parts and stakeholders, feeling like you have an established and robust routine. She brings good ideas, and understands what charities are trying to achieve. Participants in the priority setting exercises we are involved in all seem to be happy their voice has been heard. I've worked with Katherine twice - to deliver two impactful projects - and wouldn't set about a priority setting process without her!
Dr James Pickett, Head of Research, Alzheimer's Society
I have been working with the James Lind Alliance (JLA) since 2014. Katherine has been the JLA’s Senior Adviser since 2008. Katherine’s extensive knowledge and understanding of how the JLA works, its development since its inception, and the breadth of her experience in supporting groups to come up with important questions which need to be answered through rigorous research is invaluable. Her measured approach and wonderful facilitation skills navigate through sometimes difficult conversations coming to a positive conclusion and consensus helping everyone involved to feel empowered and listened to. This is a very important contribution not only to the development of health and care research, but also to the improvement of outcomes for patients.
Dr. Steph Garfield-Birkbeck, Assistant Director, National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC)
As Director of Research at the College of Optometrists (the professional and scientific body for optometry in the UK) I have had the pleasure of working with Katherine directly on two important projects – The Sight Loss and Vision Priority Setting Partnership (SLV-PSP) and the Visual Impairment and Dementia Summit (VIDem Summit). The SLV-PSP was a collaborative, cross-sector project, funded by the College of Optometrists and delivered by Fight for Sight and the James Lind Alliance. Katherine’s expertise and leadership were crucial to the success of the project. She brought energy and clarity of focus to a large scale, complex piece of work involving numerous organisations and individuals, senior professionals and members of the public. The success of that project led us to seek Katherine’s assistance with the VIDem Summit. This was an innovative project to draw out the areas of overlap between two priority setting partnerships and produce a set of research priorities for people living with concurrent dementia and visual impairment. Once again, Katherine’s ability to rapidly understand our vision for the project and provide targeted advice to refine the methodology, combined with her excellent skills at leading and facilitating complex group work, enabled us to deliver this event to excellent effect. I have worked with Katherine collaboratively since the VIDem summit to provide co-facilitation to a project at City University – I would welcome the opportunity to work with Katherine again, and would not hesitate to recommend her to others.
Michael Bowen, Director of Research, The College of Optometrists
We worked with Katherine on two James Lind Alliance priority setting partnerships addressing dementia and frailty in older adults. Katherine was efficient, professional, practical with her time and advice, and incredibly thoughtful and encouraging in her delivery. She helped us plan our projects, guided us through the processes and advised us on additional steps we could take to ensure that our work would be rigorous and impactful. Throughout all phases of our work, Katherine also made it a priority to help us acknowledge, address and include the perspectives of the diverse groups of stakeholders involved in our partnerships. Katherine was a pleasure to work with and she contributed immensely to the success of our work.
Drs. Katherine McGilton and Jennifer Bethell, Toronto Rehabilitation Institute – University Health Network, Canada
Katherine has been helping the King Baudouin Foundation to implement a multi-stakeholder dialogue for priority setting in health research in Belgium. She is now coaching our Foundation across three pilot projects. Thanks to her experience we will avoid a lot of pitfalls. She has contributed to the development of a generic priority setting framework applicable in different research topics and adapted to the Belgian context.
Bénédicte Gombault, Senior Project Coordinator, King Baudouin Foundation, Belgium
Katherine was the chair of the Steering and Data Assessment Groups for the Palliative and end of life care Priority Setting Partnership (PeolcPSP) from September 2013 to March 2015. We were immensely pleased to have her involved in the project. Her knowledge of the methodology, calmness in the face of difficulties and excellent chairmanship of a group from a very mixed background have contributed to not a small degree to the success of the overall project. Katherine is a pleasure to work with, warm and considerate, but professional, which was particularly important because of the subject matter. We have been very fortunate to have her involved with the project and I can wholeheartedly recommend her work to others considering setting up a Priority Setting Partnership or using her facilitation skills in general.
Dr Sabine Best, Head of Research, Marie Curie
The Sight Loss and Vision Priority Setting Partnership was an ambitious project. Katherine chaired the Steering Committee that oversaw the design and delivery of this large and complex project and facilitated the final workshops necessary to deliver a set of priorities. We were very impressed by Katherine’s professionalism. She commanded respect from people involved and this enabled her to build consensus amongst people with a wide range of views. She demonstrated real empathy with those involved and ensured that all voices were heard. Throughout the project she remained enthusiastic, calm and unflappable. We all really enjoyed and have benefited hugely from working with Katherine.
Michele Acton, Chief Executive, Fight for Sight
Assignments include:
- From 2008 to 2023, Senior Adviser to the James Lind Alliance (JLA), co-author and editor of the JLA Guidebook and responsible for recruiting and training the team of JLA Advisers.
- Facilitated and supported 65 JLA Priority Setting Partnerships internationally addressing healthcare issues including depression, dementia, autism, palliative care, Parkinson’s, type 2 diabetes, spinal cord injury and sight loss.
- Expert Adviser to various research priority setting projects (Health and Care Research Wales and Social Care Wales)
- Facilitation of an in-person patient workshop to set priorities for research on the provision of breast cancer surgery information and support (University of Bristol)
- Facilitation of an online consensus meeting to agree service standards for UK Paediatric Allergy Services (British Society for Allergy & Clinical Immunology)
- Facilitation of an online consensus meeting to develop a framework for end of life care and withdrawal of Extra Corporeal Membrane Support (ECMO) (Guys and St Thomas' NHS Foundation Trust)
- Facilitation of an international online consensus meeting bringing together patient and consumer health organisations, healthcare providers, information producers and health technology assessment bodies to agree the essential questions to address when providing medicines information to patients (Kings College London and the London School of Economics)
- Facilitation of an online Delphi meeting to develop a Core Outcome Set for epilepsy treatment research (University of Liverpool)
- Design and facilitation of an online adapted Delphi meeting to develop a preconception care pathway for women with epilepsy (University of Liverpool and the Walton Centre NHS Foundation Trust)
- Design and facilitation of online adapted Delphi workshops to develop Core Outcome Sets for research on family-based interventions for a) domestic violence and abuse and b) child maltreatment (University College London)
- Design and facilitation of an adapted, dementia-friendly in-person Delphi meeting to identify core outcomes for dementia care research (University of Lancaster)
- Consultant adviser to a multi-stakeholder consultation to establish Australia's national priorities for eating disorders research (InsideOut Institute, University of Sydney)
- Design and delivery of an online workshop to identify and develop priority questions for paediatric rheumatology research (NIHR CRN Children/Versus Arthritis Paediatric Rheumatology Clinical Studies Group, University of Liverpool)
- Consultant adviser on priority setting to the Birmingham, RAND and Cambridge Evaluation (BRACE) Centre.
- Delivery of a workshop to identify health research charities’ priorities for mental health and neuroscience research (Wellcome Trust)
- Delivery of the Visual Impairment and Dementia Summit, a one-day workshop bringing together people affected by visual impairment and dementia, clinicians and researchers to identify priority research themes (College of Optometrists, Alzheimer’s Society, Thomas Pocklington Trust).
- Delivery of an international workshop for an EU consortium of asthma organisations to set a European agenda for asthma research (European Asthma Research and Innovation Partnership).
- Consultant adviser on priority setting methodologies for international clients including King Baudouin Foundation (Belgium), Winnovation (Austria) and the Alberta Cancer Foundation (Canada).
- Development of a priority setting process for Knowledge Summaries to contribute to Evidence Based Veterinary Medicine (Royal College of Veterinary Surgeons).
Publications:
A refresh of the top 10 research priorities in cystic fibrosis (Thorax, 2023)
Partnering With Patients, Caregivers, and Clinicians to Determine Research Priorities for Concussion (JAMA Network Open, 2023)
Consumer and Healthcare Professional Led Priority Setting for Quality Use of Medicines in People with Dementia: Gathering Unanswered Research Questions, (Journal of Alzheimer's Disease, 2022)
Research priorities in children and adults with congenital heart disease: a James Lind Alliance Priority Setting Partnership (Open Heart, 2022)
Identifying research priorities in breast cancer surgery: a UK priority setting partnership with the James Lind Alliance (Breast Cancer Research and Treatment, 2022)
Research priorities in pernicious anaemia: James Lind Alliance Priority Setting Partnership (BMJ Open, 2022)
Patient, Caregiver, and Clinician Participation in Prioritization of Research Questions in Pediatric Hospital Medicine (JAMA Network Open, 2022)
The opportunities and challenges of implementing our research priorities (British Journal of Occupational Therapy, 2022)
Canadian epilepsy priority-setting partnership: Toward a new national research agenda (Epilepsy & Behavior, 2022)
Identifying key priorities for research to protect the consumer with food hypersensitivity: A UK Food Standards Agency Priority Setting Exercise (Clinical & Experimental Allergy, 2021)
Identifying the top research priorities in postmastectomy breast cancer reconstruction: a James Lind Alliance priority setting partnership (BMJ Open, 2021)
Research agenda setting with children with juvenile idiopathic arthritis: Lessons learned (Child: Care, Health and Development, 2021)
Partnering with survivors & families to determine research priorities for adult out-of-hospital cardiac arrest: A James Lind Alliance Priority Setting Partnership (Resuscitation Plus, 2021)
Identifying research priorities for occupational therapy in the UK: A James Lind Alliance Priority Setting Partnership (British Journal of Occupational Therapy, 2021)
Identifying what matters most for the health of older adults in Alberta: results from a James Lind Alliance Research Priority Setting Partnership (CMAJ Open, 2021)
The top 10 research priorities in diabetes and pregnancy according to women, support networks and healthcare professionals (Diabetic Medicine, 2021)
Dutch patients, caregivers and healthcare professionals generate first nationwide research agenda for juvenile idiopathic arthritis (Pediatric Rheumatology, 2021)
Rapid prioritisation of topics for rapid evaluation: the case of innovations in adult social care and social work (Health Research Policy and Systems, 2021)
Top ten priorities for anesthesia and perioperative research: a report from the Canadian Anesthesia Research Priority Setting Partnership (Canadian Journal of Anesthesia, 2020)
Innovations in Adult Social Care and Social Work Report (report on a rapid priority setting method for BRACE and RSET, 2019)
Research priorities for liver glycogen storage disease: An international priority setting partnership with the James Lind Alliance (Journal of Inherited Metabolic Disease, 2019)
Identifying Priorities for Physiotherapy Research in the UK: the James Lind Alliance Physiotherapy Priority Setting Partnership (Physiotherapy, 2019)
Priorities for research in multiple conditions in later life (multi-morbidity): findings from a James Lind Alliance Priority Setting Partnership (Age and Ageing, 2019)
Dutch juvenile idiopathic arthritis patients, carers and clinicians create a research agenda together following the James Lind Alliance method: a study protocol (Pediatric Rheumatology, 2018)
Patient and Public Involvement in Identifying Dementia Research Priorities (Journal of the American Geriatrics Society, 2018)
A roadmap to advance dementia research in prevention, diagnosis, intervention, and care by 2025 (International Journal of Geriatric Psychiatry, 2018)
Setting the top 10 research priorities to improve the health of people with Type 2 diabetes (Diabetic Medicine, 2018)
Top ten research priorities for type 2 diabetes: results from the Diabetes UK–James Lind Alliance Priority Setting Partnership (The Lancet Diabetes & Endocrinology, 2017)
A paradigm change to inform fibromyalgia research priorities by engaging patients and health care professionals (Canadian Journal of Pain, 2017)
Top 10 research priorities in head and neck cancer: Results of an Alberta priority setting partnership of patients, caregivers, family members, and clinicians (Head & Neck, 2017)
Top 10 research priorities for eating disorders (The Lancet Psychiatry, 2016)
Dementia priority setting partnership with the James Lind Alliance: using patient and public involvement and the evidence base to inform the research agenda (Age and Ageing, 2016)
Top ten research priorities for spinal cord injury: the methodology and results of a British priority setting partnership (Nature: Spinal Cord, 2015)
Research priorities in mesothelioma: A James Lind Alliance Priority Setting Partnership (Lung Cancer, 2015)
Patients’, clinicians’ and the research communities’ priorities for treatment research: there is an important mismatch (Research Involvement and Engagement, 2015)
Who decides the priorities for medical research? (Alliance Magazine, 2015)
Setting research priorities to improve the health of children and young people with neurodisability (BMJ Open, 2015)
Top ten priorities for spinal cord injury (Lancet Neurology, 2014)
The Sight Loss and Vision Priority Setting Partnership: overview and results (BMJ Open, 2014)
Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003-2013 (Journal of the Royal Society of Medicine, 2013)
Patients/carers and clinicians can set joint priorities for research in cleft lip and palate (International Journal of Pediatric Otorhinolaryngology, 2013)
Building on Success: opportunities to progress patient and public involvement in research prioritisation and commissioning (AMRC, INVOLVE and JLA, 2010)