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.

Promoting patient involvement in safety initiatives.

Between 300,000 and 1.4 million adverse events occur each year in the NHS, and about half of those that occur in inpatient settings are preventable (Department of Health Expert Group on Learning from Adverse Events in the NHS 2000). Strategies to reduce these events have focused mainly on changing systems of care and professional behaviour, but there is growing interest in involving patients in safety initiatives. This stresses the development and use of interventions to promote and support patients' and their representatives' roles in securing their own safety in health care. This article reports the results of a series of linked studies that examined how patients might effectively promote their own safety, and to explore how this might vary by context, place or demography.

Speaking up about safety concerns: multi-setting qualitative study of patients' views and experiences.

OBJECTIVES: To explore patients' and family members' experiences of and views about speaking up about safety concerns at the point of care. DESIGN: Qualitative study using 71 individual interviews and 12 focus group discussions. PARTICIPANTS AND SETTINGS: People with recent experience of one of five conditions or interventions associated with different safety problems (childhood asthma, diabetes, breast cancer, elective joint replacement and severe and enduring mental health problems) and people who had lodged concerns with healthcare providers were recruited from both NHS services (primary and secondary care) and patient support organisations. FINDINGS: Participants had identified various safety concerns in the course of their healthcare and had sometimes spoken up about these as they occurred. Their inclination and ability to speak up were apparently variously shaped by their assessments of the gravity of the threat of harm, the relative importance of their concern given other patients' needs and staff workloads and priorities, their confidence about their grounds for concern, roles and responsibilities and the likely consequences of speaking up. These assessments were pervasively influenced by the way healthcare staff behaved and related to them. People who had spoken up about concerns reported diverse responses from health professionals. Some responses averted harm or provided welcome reassurance, but others exacerbated anxieties and possibly contributed to patient harm. CONCLUSION: The potential for patients to contribute to their safety by speaking up about their concerns depends heavily on the quality of patient-professional interactions and relationships.

Effectiveness of interventions designed to promote patient involvement to enhance safety: a systematic review.

BACKGROUND: There is growing international interest in involving patients in interventions to promote and support them in securing their own safety. This paper reports a systematic review of evaluations of the effectiveness of interventions that have been used with the explicit intention of promoting patient involvement in patient safety in healthcare. METHODS: The authors searched Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, CENTRAL, CINAHL, EMBASE, HMIC, MEDLINE, MEDLINE in-process, PsycINFO and ASSIA to August 2008. We also searched databases of reports, conference proceedings, grey literature, ongoing research and relevant patient safety organisations, and hand-searched two journals. Meta-analysis of the data was not appropriate; therefore, studies were categorised according to how the interventions encouraged patients' actions to improve safety--informing the management plan, monitoring and ensuring safe delivery of treatment (by health professional and by self), making systems safer--and were critiqued in a narrative manner. FINDINGS: The authors identified 14 individual experimental and quasiexperimental studies plus one systematic review. The majority of studies fell into the monitoring and ensuring safe delivery of treatment by self category and were all related to enhancing medication safety. Authors reported improved patient safety incident outcomes for the intervention groups compared with controls where the interventions aimed to encourage patient involvement in: (1) monitoring and ensuring safe delivery of treatment by self (self-management of anticoagulation, 'easy' read information leaflet, nurse-led education to promote self-medication in hospital, patient package insert using lay terminology); (2) informing the management plan/monitoring and ensuring safe delivery of treatment by self (individualised teaching plan by nurse, pharmacist counselling). It was not possible to draw any clear conclusions as to the effectiveness of the interventions (with the exception of one specific aspect of self-medication, that is, self-management of anticoagulation) due to concerns about the methodological quality of the studies. CONCLUSIONS: There is limited evidence for the effectiveness of interventions designed to promote patient involvement on patient safety incidents and in general is poor quality. Existing evidence is confined to the promotion of safe self-management of medication, most notably relating to the self-management of oral anticoagulants.

Scoping review and approach to appraisal of interventions intended to involve patients in patient safety.

OBJECTIVE: To review the literature on the involvement of patients in efforts to promote their own or others' safety while using health care services. METHOD: A total of 1933 reports were identified as potentially relevant and 745 of these were included in the review (437 descriptions of interventions, 299 comment or opinion pieces and 42 discussions or studies of patients' willingness and ability to adopt safety-promoting behaviours). RESULTS: The rate of publication on these topics has increased, especially in the USA and UK. However, there is scant evidence of the impact of patient involvement initiatives on safety outcomes and there has been little exploration of patients' willingness and ability to adopt particular safety-oriented behaviours. We identified three broad routes by which patients' actions might contribute to their safety by helping to make sure that: their treatment is appropriate for them (informing the management plan); treatment is given as planned and according to appropriate protocols (monitoring and ensuring safe delivery of treatment); and problems and risks within health care systems are identified and reduced (informing systems improvements). CONCLUSIONS: An approach for appraising interventions intended to promote patient involvement in patient safety should involve: identification of the routes by which interventions assume patients' actions might contribute to their safety; identification of the conditions that would need to be met for patients to behave and contribute as the interventions (implicitly) assume; examination of the extent to which the intervention supports fulfilment of those conditions; and consideration of the potential negative effects of the intervention.