Identifying acne treatment uncertainties via a James Lind Alliance Priority Setting Partnership.

OBJECTIVES: The Acne Priority Setting Partnership (PSP) was set up to identify and rank treatment uncertainties by bringing together people with acne, and professionals providing care within and beyond the National Health Service (NHS). SETTING: The UK with international participation. PARTICIPANTS: Teenagers and adults with acne, parents, partners, nurses, clinicians, pharmacists, private practitioners. METHODS: Treatment uncertainties were collected via separate online harvesting surveys, embedded within the PSP website, for patients and professionals. A wide variety of approaches were used to promote the surveys to stakeholder groups with a particular emphasis on teenagers and young adults. Survey submissions were collated using keywords and verified as uncertainties by appraising existing evidence. The 30 most popular themes were ranked via weighted scores from an online vote. At a priority setting workshop, patients and professionals discussed the 18 highest-scoring questions from the vote, and reached consensus on the top 10. RESULTS: In the harvesting survey, 2310 people, including 652 professionals and 1456 patients (58% aged 24 y or younger), made submissions containing at least one research question. After checking for relevance and rephrasing, a total of 6255 questions were collated into themes. Valid votes ranking the 30 most common themes were obtained from 2807 participants. The top 10 uncertainties prioritised at the workshop were largely focused on management strategies, optimum use of common prescription medications and the role of non-drug based interventions. More female than male patients took part in the harvesting surveys and vote. A wider range of uncertainties were provided by patients compared to professionals. CONCLUSIONS: Engaging teenagers and young adults in priority setting is achievable using a variety of promotional methods. The top 10 uncertainties reveal an extensive knowledge gap about widely used interventions and the relative merits of drug versus non-drug based treatments in acne management.

Top 10 research priorities relating to life after stroke--consensus from stroke survivors, caregivers, and health professionals.

BACKGROUND: Research resources should address the issues that are most important to people affected by a particular healthcare problem. Systematic identification of stroke survivor, caregiver, and health professional priorities would ensure that scarce research resources are directed to areas that matter most to people affected by stroke. AIMS: We aimed to identify the top 10 research priorities relating to life after stroke, as agreed by stroke survivors, caregivers, and health professionals. METHODS: Key stages involved establishing a priority setting partnership; gathering treatment uncertainties from stroke survivors, caregivers, and health professionals relating to life after stroke (using surveys administered by e-mail, post, and at face-to-face meetings); checking submitted treatment uncertainties to ensure that they were clear, unanswered questions about the effects of a treatment/intervention; interim prioritization to identify the highest priority questions (objectively identified from ranking of personal priorities by original survey respondents); and a final consensus meeting to reach agreement on the top 10 research priorities. RESULTS: We gathered 548 research questions that were refined into 226 unique unanswered treatment uncertainties. Ninety-seven respondents completed the interim prioritization process, objectively identifying 24 shared priority treatment uncertainties. A representative group of 28 stroke survivors, caregivers, and health professionals attended a final meeting, reaching consensus on the top 10 research priorities relating to life after stroke. Six of the agreed top 10 research priorities related to specific stroke-related impairments, including cognition, aphasia, vision, upper limb, mobility, and fatigue. Three related to more social aspects of 'living with stroke' including coming to terms with long-term consequences, confidence, and helping stroke survivors and their families 'cope' with speech problems. One related to the secondary consequences of stroke and subsequent stroke prevention. CONCLUSIONS: The top 10 research priorities relating to life after stroke have been identified using a rigorous and person-centered approach. These should be used to inform the prioritization and funding of future research relating to life after stroke.

Development of a new model to engage patients and clinicians in setting research priorities.

OBJECTIVES: Equitable involvement of patients and clinicians in setting research and funding priorities is ethically desirable and can improve the quality, relevance and implementation of research. Survey methods used in previous priority setting projects to gather treatment uncertainties may not be sufficient to facilitate responses from patients and their lay carers for some health care topics. We aimed to develop a new model to engage patients and clinicians in setting research priorities relating to life after stroke, and to explore the use of this model within a James Lind Alliance (JLA) priority setting project. METHODS: We developed a model to facilitate involvement through targeted engagement and assisted involvement (FREE TEA model). We implemented both standard surveys and the FREE TEA model to gather research priorities (treatment uncertainties) from people affected by stroke living in Scotland. We explored and configured the number of treatment uncertainties elicited from different groups by the two approaches. RESULTS: We gathered 516 treatment uncertainties from stroke survivors, carers and health professionals. We achieved approximately equal numbers of contributions; 281 (54%) from stroke survivors/carers; 235 (46%) from health professionals. For stroke survivors and carers, 98 (35%) treatment uncertainties were elicited from the standard survey and 183 (65%) at FREE TEA face-to-face visits. This contrasted with the health professionals for whom 198 (84%) were elicited from the standard survey and only 37 (16%) from FREE TEA visits. CONCLUSIONS: The FREE TEA model has implications for future priority setting projects and user-involvement relating to populations of people with complex health needs. Our results imply that reliance on standard surveys may result in poor and unrepresentative involvement of patients, thereby favouring the views of health professionals.

Reaching a consensus and ranking research priorities in urinary incontinence.

Gaps in the evidence base in healthcare are common, and this is also the case for the management of urinary incontinence. The James Lind Alliance helped patients and clinicians to identify and then prioritise gaps in the evidence base for managing this condition, producing a list of 10 research priorities. This article outlines the process involved in reaching this consensus.

Identifying and prioritizing uncertainties: patient and clinician engagement in the identification of research questions.

BACKGROUND: To arrive at an agreed, prioritized ranking of treatment uncertainties in asthma that need further research, by developing a collaboration of patients, carers and clinicians, facilitated by the James Lind Alliance Working Partnership between Asthma UK and the British Thoracic Society. METHODS: A four-step procedure: (1) establish a collaborative Working Partnership; (2) identify and collect treatment uncertainties by using a patient survey and analysing existing systematic reviews, clinical guidelines and query-answering services; (3) categorize uncertainties; and (4) convene a workshop using a nominal group process to establish a ranked prioritization of treatment uncertainties in asthma. FINDINGS: Agreement and rankings were reached for 10 treatment uncertainties. The highest was given to the uncertainty surrounding the adverse effects of inhaled and oral steroids. The top three priorities dealt with clinical management issues, where uncertainties still exist, namely concerns about the side effects of inhaled and oral steroids, how to manage asthma when other illnesses exist or how to rely on personal decisions in an ever-changing illness (self-management). INTERPRETATION: The key outcome is the generation of a prioritized list of treatment uncertainties in asthma, agreed by a collaboration of patients and health professionals, to inform the commissioning of new research. Such a large number of patient-identified treatment uncertainties had not previously been identified in the literature, an indication perhaps that asthma self-management is a neglected research area. Whether the results have an influence of research funding decisions is not yet known.

Prioritizing research: Patients, carers, and clinicians working together to identify and prioritize important clinical uncertainties in urinary incontinence.

AIMS: Research often neglects important gaps in existing evidence. Throughout healthcare, clinicians and patients face avoidable "clinical uncertainties" daily, making decisions about treatments without reliable evidence about their effects. This partnership of patients and clinicians aimed to identify and prioritize "clinical uncertainties" relating to treatment of urinary incontinence (UI). METHODS: UK clinician and patient organizations whose remit includes UI were invited to participate. Participating organizations consulted memberships to identify "uncertainties" affecting treatment decisions. "Uncertainties" were also identified in published research recommendations. Prioritization involved two phases: shortlisting of "uncertainties" by organizations; patient-clinician prioritization using established consensus methods. Prioritized "uncertainties" were verified by checking any available relevant up-to-date published systematic reviews. RESULTS: Thirty organizations were invited; 8 patient and 13 clinician organizations participated. Consultation generated 417 perceived "uncertainties," research recommendations 131. Refining, excluding and combining produced a list of 226. Prioritization shortlisted 29 "uncertainties," then a "top ten" (5 submitted by clinicians, 4 by patients, 1 from research recommendations). CONCLUSIONS: The partnership successfully developed and tested a systematic and transparent methodology for patient-clinician consultation and consensus. Through consensus, unanswered research questions of importance to patients and clinicians were identified and prioritized. The final list reflects the heterogeneity of populations, treatments and evidence needs associated with UI. Some prioritized "uncertainties" relate to treatments that are widely used yet whose effects are not thoroughly understood, some to access to care, some to precise surgical questions. Research needs to address the uncertainties range from systematic reviewing to primary research.