1. The James Lind Alliance
Involving patients and clinicians in setting research priorities
Beccy Maeso and Caroline Whiting
James Lind Alliance

2. JLA Priority Setting Partnerships
Involving patients, carers and clinicians in setting priorities for research
Agree by consensus a prioritised “top 10” list of uncertainties for research
Publicise the methods and results of the PSP
Draw the results to the attention of research funders independently of the JLA
JLA is a non-profit making initiative that brings together patients, carers and clinicians in priority setting partnerships.
These partnerships identify and prioritise uncertainties or “unanswered questions” about the effects of treatments that they agree are the most important. – focusing on specific conditions or healthcare settings
Research on the effects of treatments is usually led by researchers or funders. This can mean that it can fail to address questions that matter to patients and to the clinicians to whom patients look for help. This is why the JLA process focuses on patients and clinicians.  
The aim of this is to help ensure that those who fund health research are aware of what really matters to both patients and clinicians.
What do we do? Priority Setting Partnerships
Patients, carers and clinicians
Focusing on single conditions or areas
Identifying uncertainties about treatments (broadly defined)
Prioritising the most important for research
A top 10

3. Why involve patients and clinicians?
Who normally decides what gets researched?
Researchers
Pharmaceutical industry
The priorities of people with conditions and the people who treat and care for them can be very different from those of researchers.
There is some evidence that there is a mismatch between what patients and health professionals want to see researched and the research that is actually done. The James Lind Alliance (JLA) research Priority Setting Partnerships (PSPs) were created to address this mismatch – to help make sure that the research that is done gives the answers that patients, families and health professionals really need in their everyday lives.
Shaping the research agenda:
Giving a bigger voice to patients, carers and clinicians
Making research relevant

4. What is the JLA? Established in 2004 by
Royal Society of Medicine – Dr John Scadding
James Lind Library - Sir Iain Chalmers
INVOLVE – Sir Nick Partridge
JLA Advisers and JLA Guidebook
Principles of transparency, inclusion/exclusion, equality of voice and evidence base
The JLA was conceived in 2004 to provide a framework for identifying ‘treatment uncertainties’ from patients, carers and clinicians which could be checked against the evidence based and then prioritised. As the method has developed, the notion of treatment has evolved into a more general definition of ‘interventions’ – in other words, treatments, care and other interventions that are designed to make a difference to patients and which can be tested and evaluated by clinical research.
Who was James Lind
James Lind ( )
A Royal Navy ship surgeon and pioneer of clinical trials
Transparency of process
Equality - balanced inclusion of patient, carer and clinician interests and perspectives
Exclusions
- of non-clinician researchers for voting purposes, but who may be involved in all other aspects of the process
- of groups/organisations that have significant competing interests, for example pharmaceutical companies
Audit trail of original submitted uncertainties, to final prioritised list
recognition that making priority decisions does not create new knowledge, but reviews existing evidence of uncertainty.
Priority setting can only occur if the identified treatment uncertainties have been checked to ensure that they have not been answered by an up-to-date systematic review.

5. Prioritise uncertainties
Priority setting workshop
Patients, carers and clinicians
A day of democratic discussion and ranking
Agree the top 10

6. Completed UK Partnerships
Acne
Lyme Disease
Alcohol-related Liver Disease
Mesothelioma
Anaesthesia
Mild to Moderate Hearing Loss
Asthma
Multiple Sclerosis
Bipolar
Neuro-oncology
Cavernoma
Palliative and end of life care
Childhood Disability
Parkinson’s
Cleft Lip
Patient Safety in Primary Care
Contraception
Pressure Ulcers
Cystic Fibrosis
Preterm Birth
Dementia
Prostate Cancer
Diabetes (Type 1)
Schizophrenia
Ear, Nose and Throat
Sight Loss and Vision
Early Hip and Knee Osteoarthritis
Spinal Cord Injury
Eczema
Stillbirth
Emergency Medicine
Surgery for Common Shoulder Problems
Hair Loss
Stroke in Scotland
Hidradenitis Suppurativa
Tinnitus
Hip and Knee Replacement
Urinary Incontinence
Inflammatory Bowel Disease
Vitiligo
Intensive Care
Womb Cancer
Kidney Transplant
Treatment uncertainty: Wide definition:
For example the anaesthesia PSP had in its top ten: How can patient care around the time of emergency surgery be improved? And How can we improve communication between the teams looking after patients throughout their surgical journey?

7. Current UK Partnerships
Ageing and multi-morbidity
Non-alcohol related liver disease /gallbladder disorders
Alcohol-related liver disease
Blood transfusion and blood donation
Patient safety in specialist care
Bleeding disorders
Pessary use for prolapse
Cellulitis
Psoriasis
Rare anaemias
Common conditions affecting the hand and wrist
Musculoskeletal Rare Diseases in Adults
Coeliac disease
Scoliosis
Cystic fibrosis
Teenage and young adult cancer
Digital technologies for mental health
Tissue engineering
Early osteoarthritis of the hip and knee
Type 2 diabetes
Endometriosis
Learning difficulties in children and young people in Scotland
Fragility
Healthcare Associated Infections
Adult Social Work
Hyperhidrosis
Multiple Conditions in Later Life
Idiopathic Intracranial Hypertension
Facial Reconstruction
Oral and dental health
Broken bones in older people
Mental health in children and young people
Living with and beyond cancer
Physiotherapy
Miscarriage
Again there are examples of the breadth of the use of the term “treatment uncertainty”: Patient safety in primary care
Reflection of the change in health and care – living better or well with conditions

8. JLA International Netherlands Canada Eating disorders
Dementia
Hepatic glycogen storage diseases
Fibromyalgia
Hypertension
Kidney Cancer
Neuro-developmental disorders
Germany
Pancreatic Cancer
Frailty
Metastatic Breast Cancer
Post mastectomy breast reconstruction
Head and neck cancer
Seniors (Alberta)
We also help and advise on PSPs which are based on the JLA method
- Dialysis priority setting in Canada
- Dystrophic Epidermolysis Bullosa in Spain

9. Next steps Promote priorities to researchers and all funders
Dissemination of findings
Publications
Conferences

10. Outcomes
Q7. What are the benefits of breathing exercises as a form of physical therapy for asthma?

11. Outcomes

12. A lasting legacy: The patient
“I found that being involved has given me back an element of control over my illness.  This is so much more than I imagined I could ever have done when I first became ill.  The workshop left me feeling that we patients have an important contribution to make.” 
Irenie Ekkeshis, Sight Loss and Vision PSP

13. A lasting legacy: The clinician
“This has changed how I practice medicine. It has changed my understanding of what it means to listen to patients. It has changed the language I use when I speak with them. Most importantly it has changed my vision of how to deliver the care we give them. It has made it our vision.”
Noémi Roy, Rare Inherited Anaemias PSP

14. For more information… www.jla.nihr.ac.uk @LindAlliance
Some of the challenges of undertaking a PSP
Engaging with patients
Engaging with clinicians
Unpredictability
Difficult data
Measuring impact
Success factors:
A committed Steering Group
Administrative support
Resources
A well-defined scope
A vision beyond the top 10
Resources:
We have a costings template. Headings include:
steering group costs (at least 4 face to face meetings during the lifetime of the PSP
PSP management which includes the JLA adviser costs (usual about 10 days’ worth of work depending on the complexity of the PSP)
Administration time and project management
Information specialist – this is by far and away the highest cost but it is worth spending here as it makes the PSP that much more efficient and more likely to finish on time and in scope
Communications and website (includes the survey mechanism)
Final workshop and all that goes with organising a mid-size face to face meeting. This will include additional facilitation costs depending on the number of facilitators needed over and above the JLA adviser.
Publication of outputs
Better to err on the side of caution and over estimate costs – could be around the £15k mark.
@LindAlliance