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Enhancing Patient Ergonomics with Patient and Public Involvement in Research Projects
Published in Richard J. Holden, Rupa S. Valdez, The Patient Factor, 2021
Dominic Furniss, Alexandra R. Lang, Colleen Ewart
In an ideal world, PPI should be an integral component of formative work to identify and develop research concepts. This is often difficult to achieve due to funding mechanisms which ultimately rely on the goodwill of PPI volunteers to support the development of research proposals. One notable exception is the approach taken and funds provided by a UK-based charity—The James Lind Alliance (JLA, 2020). The JLA brings patients, caregivers, and clinicians together in Priority Setting Partnership to identify and prioritize unanswered research questions or evidence uncertainties that they agree are the most important. The aim of this is to make sure health research funders are aware of the issues that matter most to the people who need to use the research in their everyday lives. This scheme is currently limited to healthcare-specific research domains.
Harvesting and publishing patients’ unanswered questions about the effects of treatments
Published in Peter Littlejohns, Patients, the Public and Priorities in Healthcare, 2018
It must be clear from this account that methods to identify uncertainties about the effects of treatments remain relatively poorly explored. There is currently no justification to confidently promote any specific approach to collecting them. This particularly applies to methods for trying to identify uncertainties deemed important by patients, carers and clinicians. The strengths and limitations of the approaches that have been used thus far might be clarified by a more detailed analysis of the experiences described above and other studies seeking patients’ and clinicians’ priorities for research.14 In light of experience so far, the James Lind Alliance is compiling a handbook to guide future priority-setting partnerships (PSPs) in the methods used to elicit uncertainties from patients, carers and clinicians.
The critical importance of patient and public involvement for research into complex interventions
Published in David A. Richards, Ingalill Rahm Hallberg, Complex Interventions in Health, 2015
One example of involving patients (and their carers and clinicians) in setting research priorities is the James Lind Alliance (http://www.lindalliance.org), named after one of the pioneers of clinical trials who discovered that vitamin C in the form of oranges and lemons was helpful in preventing scurvy in sailors. The James Lind Alliance brings patients, carers and clinicians together on an equal footing to work on specific health conditions (Partridge and Scadding, 2004). These condition-specific groups identify uncertainties in the treatment of these conditions and work to develop consensus on a priority list of around ten questions that they would like answering. These priorities are then made available for researchers to consult and for research funders to think about commissioning research.
Outcomes measures in idiopathic intracranial hypertension
Published in Expert Review of Neurotherapeutics, 2021
Susan P Mollan, Alexandra J Sinclair
Important principles for the management of IIH have been agreed [1] where modifying the underlying pathophysiology, with weight management is key for all patients with typical disease and a raised body mass index [4]. In those with rapidly declining visual function, now between 7 and9% of those with IIH [6], an emergency intervention is warranted to save sight. However headache management remains a high priority as it confers morbidity to the majority of patients [5]. The 2015 Cochrane review concluded that there is a lack of high class evidence to guide management of the condition [10]. There are few published randomized clinical trials (RCTs) and a small number of open label trials (Table 1) [11–19]. The choice of a primary end point to determine successful outcome has varied in trials between intracranial pressure and visual function (Table 1). To date there has been no randomized control trial evaluating treatment for headache attributed to IIH, although a recent open label study used a primary end point of change in monthly moderate and severe headache days [15]. Given the multidisciplinary nature of the condition, investigators rely on their specialist experience to define successful treatment outcomes. To address these differences and to consider patients and carers views the James Lind Alliance, a United Kingdom National Institute for Health Research-supported priority setting partnership initiative was established. This defined diagnostic and management outcomes that should be prioritized for research, determined by patients, carers, and health care physicians [20].
Mapping the evidence and gaps of interventions for pediatric chronic pain to inform policy, research, and practice: A systematic review and quality assessment of systematic reviews
Published in Canadian Journal of Pain, 2020
Kathryn A. Birnie, Carley Ouellette, Tamara Do Amaral, Jennifer N. Stinson
Eligible systematic reviews and clinical practice guidelines were also independently coded by two authors (K.A.B. and C.O.) for relevance to each of the top ten patient-oriented research priorities for pediatric chronic pain identified in the Partnering For Pain priority-setting partnership.7 In brief, Partnering For Pain engaged hundreds of diverse Canadians with lived experience with pediatric chronic pain, family members, and multidisciplinary health care providers across four priority setting phases using the James Lind Alliance Priority Setting Partnership methodology. The James Lind Alliance methodology is recognized as being robust, strategic, objectively based and inclusive, and promoting equity in patient voices.33 In phase 1, 215 Canadians (86 patients [40.0%], 56 family members [26.0%], and 73 health care providers [34.0%]) submitted 540 potential priorities that were developed into 112 unique research questions (phase 2). Of the 112 questions, 63 were rated for importance by 57 participants (19 patients [33%], 17 family members [30%], and 21 health care providers [37%]) in phase 3. In phase 4, 20 participants (6 patients [30%], 6 family members [30%], and 8 health care providers [40%]) discussed the 25 most highly rated questions and reached consensus on the final top ten.7 The participant group was diverse with regards to age, sex, ethnicity, geographic location, chronic pain condition, care setting, and health care profession. A thorough discussion about the rationale, methodology, findings, and limitations of the Partnering For Pain priority-setting partnership is available in our previous peer-reviewed publication.7
Researching what matters to improve chronic pain care in Canada: A priority-setting partnership process to support patient-oriented research
Published in Canadian Journal of Pain, 2018
Patricia Poulin, Yaadwinder Shergill, Heather Romanow, Jason W. Busse, Christine T. Chambers, Lynn Cooper, Paula A. Forgeron, Anita Olsen Harper, Maria Hudspith, Alfonso Iorio, Chitra Lalloo, Carley Ouellette, Rosalind Robertson, Sandy Smeenk, Bonnie Stevens, Jennifer Stinson
The James Lind Alliance (JLA) has developed a process referred to as a priority-setting partnership, which is designed to bring together clinicians and patients to identify treatment uncertainties or important questions about the treatment of health conditions that are not answered by current research.26 Using this process, research priorities have already been established for more than 50 illnesses,27–30 such as fibromyalgia31 and chronic kidney disease,32 but this has not yet been completed for chronic pain in general. The development of such a priority-setting agenda is imperative to guide national research efforts to ultimately improve chronic pain care and patient outcomes.