The James Lind Alliance and Fibromyalgia

Research objectives should be focused toward advancing knowledge that has meaningful impact on health. However, research agendas are mostly driven by the health care community, with limited input from patients.

The James Lind Alliance (JLA) is a non-profit making initiative which brings patients, caregivers and clinicians together in Priority Setting Partnerships (PSPs) to first identify and then prioritize unanswered questions about an illness and / or the effects of treatments that this group of people agrees are the most important. This information helps ensure that those who are funding health research are aware of what matters to patients, their caregivers and clinicians since they are the end users of any funded research.

In 2014, the Canadian Institute of Health Research (CIHR)’s Institute of Musculoskeletal Health (IMHA) and the James Lind Alliance (JLA) set up of PSP to identify the unanswered questions about the management of adult fibromyalgia from patient / caregiver and clinician’s perspective and then prioritize into the top ten that patient/ caregivers and clinicians agreed were the most important. This PSP was completed in 2016. To see the top 10 Priorities go to https://www.jla.nihr.ac.uk/priority-setting-partnerships/fibromyalgia-canada/top-10-priorities.htm

The Fibromyalgia Association Canada has reviewed each of the top Fibromyalgia Top 10 Priorities and wondered how many of these have actually been researched. Over the next 10 months we will be posting one priority and the recent research we have found for each priority the authors of the study and the website where the study can be found.

Priority # 1

Can early targeted/personalised treatment plans based on sub-grouping and/or staging of severity improve outcome for people living with fibromyalgia?

Patient-centered outcome criteria for successful treatment of facial pain and fibromyalgia

Authors: Stutts LA, Robinson ME, McCulloch RC, Banou E, Waxenberg LB, Gremillion HA, Staud R.J Orofac Pain. 2009 Winter;23(1):47-53.
https://pubmed.ncbi.nlm.nih.gov/19264035/

Person-centered approach to care, teaching, and research in fibromyalgia syndrome: justification from biopsychosocial perspectives in populations

Authors: Alfonse T Masi 1, Kevin P White, June J Pilcher
https://pubmed.ncbi.nlm.nih.gov/12430098/

A historical and clinical perspective endorsing person-centered management of fibromyalgia syndrome

Authors: Alfonse T Masi 1, Ann Vincent
https://pubmed.ncbi.nlm.nih.gov/26088217/

Person-centered medicine versus personalized medicine: is it just a sophism? A view from chronic pain management.

Authors: Braš M, Dorđević V, Milunović V, Brajković L, Miličić D, Konopka L.
https://pubmed.ncbi.nlm.nih.gov/21963691/