toto grønlund jla adviser 2018
TRANSCRIPT
PRIORITY SETTING PARTNERSHIPS, THE JAMES LIND ALLIANCE WAY
Toto Grønlund
JLA Adviser
2018
WHO IS THE JLA?
Sir Iain Chalmers
Dr John Scadding
Sir Nick Partridge
and all thePriority Setting
Partnerships
Current partnershipsHealthcare Associated Infections Broken Bones in Older People: Fragility Fractures of
the Upper LimbRare Anaemias Advanced Heart FailureMusculoskeletal Rare Diseases in Adulthood Seniors' Health in Alberta, CanadaPost Mastectomy Breast Reconstruction (Canada) Paediatric Orthopaedic Lower Limb SurgeryBleeding Disorders HyperacusisSafe Care for Adults with Complex Health Needs (Previously named 'Patient Safety in Specialist Care')
Vascular Surgery
Digital Technology for Mental Health Foot HealthBroken bones in older people (Musculoskeletal Injury: fragility fracture of the lower limb and pelvis)
Heart surgery
Oral and Dental Health Hyperemesis gravidarum (HG)Learning Difficulties in Children and Young People (Scotland)
Hypertension in Pregnancy
Idiopathic Intracranial Hypertension (IIH) Malnutrition and Nutritional ScreeningMetastatic Breast Cancer (Canada) Revison Knee SurgeryMental Health in Children and Young People Anaesthesia (Canada)Living With and Beyond Cancer Colorectal CancerPancreatic cancer (Germany) Juvenile Idiopathic Arthritis (JIA) (Netherlands)Lichen Sclerosus Management of Obstetric Anal Sphincter Injuries
(OASIs)International Liver Glycogen Storage Diseases (Netherlands / international)
Lysosomal storage diseases
Adult Social Work Excessive sweating (hyperhidrosis)Psoriasis Degenerative Cervical Myelopathy E-cigarettes Colorectal cancer (Germany)
JLA INTERNATIONAL PSPS
Canada
• Dementia
• Fibromyalgia
• Hypertension
• Kidney Cancer
• Neuro-developmental disorders
• Frailty
• Metastatic Breast Cancer
• Post mastectomy breast
reconstruction
• Head and neck cancer
• Seniors (Alberta)
• Anaesthetics
• Venous Thromboembolisms
Netherlands
• Eating disorders
• Hepatic glycogen storage diseases
Germany
• Pancreatic cancer
• Colorectal cancer
New Zealand
• Subfertility
Collaborations – UK, Switzerland,
Canada, Netherlands
• Degenerative Cervical Myelopathy
WHY THE JLA
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.
WHAT WE DO
• Work together on identifying and prioritising unanswered questions about health and care
• Find out what research is important to:
• People with lived experience including..
• Patients / Carers / relatives
• Professionals
ALSO REDUCES WASTED RESEARCH
Avoidable waste in the production and reporting of research evidence
•Iain Chalmers, DSc ; Prof Paul Glasziou, RACGP
Published:June 15, 2009 DOI:https://doi.org/10.1016/S0140-6736(09)60329-9
HOW DO WE DO IT?
The principles
• Inclusiveness
• Methodological transparency
• Using and contributing to the evidence base
1 – Startup (4 weeks)
• Initial idea!
• Project proposal, funding
• Form Steering Group
• Agree Scope
• Identify Partners
2 - Data Collection (8-10 weeks)
• Survey design
• Target audiences
• Survey formats
• Publicity
• Collect people’s questions
• Harvest from literature
3 - Data Analysis (12-20 weeks)
• Process responses
• Remove out of scope
• Group similar Qs
• Summary questions
• Verify Unanswered
• Agree long-listfor interim prioritisation
The process…Start up and the data
4 – Interim prioritisation (6-8 weeks)
• Online survey to wide audience
• Asked to pick their top 10
• Focus groups or workshops
• Analysis of results, agree on short list of 20-25
5 – Final prioritisation (1 day)
• Final consensus workshop, up to 30 people with lived experience, professionals & steering group members
• Agree Top 10
Next Steps and Follow up (years)
• Publish agreed Top 10 + all long list questions
• Form research questions
• Papers, publications
• Track resulting research
The process: prioritisation
2- GATHER QUESTIONS
• Survey:
• online,
• ipad,
• paper
• Focus groups
Link
Link
SURVEY RESPONSES !
JLA Partnership Survey
respondents
Submitted
questions
Sight loss 2220 4461
Dementia 1563 4116
Hyperacusis 311 2200
Vitiligo 461 1427
Type 1 diabetes 583 1141
Child disability 369 809
3 - DATA ANALYSIS
➢ Prepare the dataset
o Remove out of scope questions
o Categories, emerging themes
o Sort out duplicates
o Format into summary questions (these are NOT research questions)
o Verify the questions as unanswered
➢ Aim is to agree a long list of c 80 (or less) questions for interim prioritisation
3 - DATA ANALYSIS
This takes time
4 - INTERIM PRIORITISATION
• Views from a WIDE range of people with lived experience
• Aim is to get from a long list (<80) to a short list (c. 20-25)
link
INTERIM PRIORITISATION
6 - FINAL CONSENSUS WORKSHOP
• A day of democratic discussion and ranking
• Up to 30 People with lived experience, carers and professionals
• Prioritise the shortlist of 20-25 questions
• Agree the top 10
RESULTS
Q10. What interventions could reduce weight gain in schizophrenia?
RESULTS
Sight Loss and Vision PSP –
Fight for Sight has awarded over £6.5 million to 110 projects that directly address priorities in all 12 categories of eye conditions
RESULTS
Palliative and End of Life Care PSP
CHALLENGES
• Engaging with people with lived experience & professionals
• Difficult data
• Time
SUCCESS FACTORS
• A committed, balanced Steering Group
• Supportive Partners
• A well-defined scope
IF YOU WOLD LIKE TO JOIN US
AND FOR MORE INFORMATION…
www.jla.nihr.ac.uk
@LindAlliance @totogronlund