Beccy Maeso, The James Lind Alliance The James Lind Alliance Perspective

Transcription

1 Beccy Maeso, The James Lind Alliance The James Lind Alliance Perspective

2 The James Lind Alliance Tackling treatment uncertainties together Beccy Maeso James Lind Alliance

3 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

4 Why patients and clinicians Interventions mentioned in commercial trials, non-commercial trials and research priorities identified by JLA PSPs, % 20 90% 80% % 74 60% 50% 40% Education and training, service delivery, psychological, physical, exercise, complementary, diet, other Radiotherapy, surgery and perioperative, devices, and diagnostic 30% 29 Drugs, vaccines and biologicals 20% % 23 0% JLA patient-clinician Priority Setting Partnerships Registered noncommercial trials Registered commercial trials Crowe et al. (2015) Patients, clinicians and the research communities priorities for treatment research: there is an important mismatch, Research Involvement and Engagement, 1:2

5 Adding Value in Research maximising the potential impact of research Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet 2009; 374 (9683): 86-89

6 Established in 2004 What is the JLA? Royal Society of Medicine Dr John Scadding James Lind Library - Sir Iain Chalmers INVOLVE Sir Nick Partridge Since April 2013: part of NETSCC JLA Advisers The Guidebook

7 Key principles Transparency Inclusion / exclusion Equality Evidence base

8 Gathering Gathering potential uncertainties via surveys and literature search JLA Priority Setting Process: the funnel Analysis Raw questions counted, categorised and refined, indicative questions prepared Prioritisation Interim prioritisation via survey Top 10 Final priority setting workshop

9 How does a PSP work (1) Steering group and JLA adviser Collective responsibility for the PSP All are responsible for driving the PSP Transparency Declarations of interest Exclusions Check uncertainties Prioritise uncertainties Promote priorities to researchers and funders

10 How does a PSP work (2) Gather uncertainties The survey Patients and carers Clinicians Research recommendations Checking the data Interim prioritisation Other sources Helpline data Healthtalk Online

11 How does a PSP work (3) The prioritisation workshop Clinicians, patients and carers come together Facilitated by the JLA adviser and colleagues Getting to the top 10 Nothing is lost The PSP website The JLA website

12 Final priority setting

13 Completed Partnerships Asthma Urinary incontinence Vitiligo Prostate cancer Schizophrenia Type 1 diabetes ENT aspects of balance Life after stroke Eczema Tinnitus Cleft lip and palate Lyme disease Pressure ulcers Sight loss and vision Dementia Multiple sclerosis Hidradenitis suppurativa Acne Anaesthesia & perioperative care Childhood neurodisability Hip & knee replacement for osteoarthritis Parkinson s disease Pre-term birth Palliative & end of life care Neuro oncology Stillbirth Depression Hair loss Kidney transplant Cavernoma Mild to moderate hearing loss Surgery for common shoulder complaints Inflammatory bowel disease Intensive care Spinal cord injury Mesothelioma Autism Stroke in Scotland Womb Cancer Bipolar

14 Current Partnerships Ageing and multi-morbidity Alcohol related liver disease Blood transfusion and blood donation Cellulitis Common conditions affecting the hand and wrist Contraception Cystic fibrosis Early osteoarthritis of the hip and knee Emergency medicine Endometriosis Healthcare Associated Infections Miscarriage Non-alcohol related liver disease /gallbladder disorders Patient safety in primary care Rare anaemias Rare bone diseases Scoliosis Teenage and young adult cancer Tissue engineering Type 2 diabetes Learning difficulties in children and young people in Scotland

15 Netherlands Eating disorders Canada Dementia Fibromyalgia Hypertension Kidney Cancer Neuro-developmental disorders Post mastectomy breast reconstruction Head and neck cancer JLA International

16 Next steps

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18 Sight Loss and Vision PSP 12 categories covering 100+ eye conditions October 2013: parliamentary reception at the House of Lords November 2013: 24 small grants awarded by Fight for Sight Cataract clinical trial -to test the safety and effectiveness of laser-assisted cataract surgery

19 What difference does it make?

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

21 Outcomes Q2. What training is needed to recognise the early signs of recurrence of schizophrenia?

22 Outcomes Making a Difference (1) After my husband died I wanted to use my experience of this dreadful disease to try and help shape future treatments and further research for mesothelioma patients. I found it extremely refreshing that patients, carers, health professionals and clinicians were all working together to identify the top research priorities. Heather Foot, carer, Mesothelioma Priority Setting Partnership

23 Outcomes Making a Difference (2) The week after the JLA workshop, a patient came to see me in a clinic, and wanted a change of antipsychotic medication because of sexual dysfunction. Without the experience of the JLA process, it is unlikely that this issue would have been afforded as much weight as it was. Prof Keith Lloyd, Psychiatrist, Schizophrenia Priority Setting Partnership

24 For more information