Public involvement and health research system governance: a qualitative study.

BACKGROUND: Interest in public involvement in health research projects has led to increased attention on the coordination of public involvement through research organisations, networks and whole systems. We draw on previous work using the 'health research system' framework to explore organisational actors and stewardship functions relevant to governance for public involvement. METHODS: To inform efforts in Ontario, Canada, to mobilise public involvement across the provincial health research enterprise, we conducted an exploratory, qualitative descriptive study of efforts in two jurisdictions (England, United Kingdom, and Alberta, Canada) where there were active policy efforts to support public involvement, alongside jurisdiction-wide efforts to mobilise health research. Focusing on the efforts of public sector organisations with responsibility for funding health research, enabling public involvement, and using research results, we conducted in-depth, semi-structured interviews with 26 expert informants and used a qualitative thematic approach to explore how the involvement of publics in health research has been embedded and supported. RESULTS: We identified three sets of common issues in efforts to advance public involvement. First, the initial aim to embed public involvement leveraged efforts to build self-conscious research 'systems', and mobilised policy guidance, direction, investment and infrastructure. Second, efforts to sustain public involvement aimed to deepen involvement activity and tackle diversity limitations, while managing the challenges of influencing research priorities and forging common purpose on the evaluation of public involvement. Finally, public involvement was itself an influential force, with the potential to reinforce - or complicate - the ties that link actors within research systems, and to support - or constrain - the research system's capacity to serve and strengthen health systems. CONCLUSIONS: Despite differences in the two jurisdictions analysed and in the organisation of public involvement within them, the supporters and stewards of public involvement sought to leverage research systems to advance public involvement, anticipated similar opportunities for improvement in involvement processes and identified similar challenges for future involvement activities. This suggests the value of a health research system framework in governance for public involvement, and the importance of public involvement for the success of health research systems and the health systems they aim to serve.

Public involvement in health research systems: a governance framework.

BACKGROUND: Growing interest in public involvement in health research has led to organisational and policy change. Additionally, an emerging body of policy-oriented scholarship has begun to identify the organisational and network arrangements that shape public involvement activity. Such developments suggest the need to clearly conceptualise and characterise public involvement in health research in terms of governance. METHODS: We drew on an established health research system framework to analyse governance functions related to public involvement, adapting scoping review methods to identify evidence from a corpus of journal papers and policy reports. We drew on the logics of aggregation and top down configuration, using a qualitative interpretive approach to combine and link findings from different studies into framework categories. RESULTS: We identified a total of 32 scholarly papers and 13 policy reports (n = 45 included papers) with relevance to governance for public involvement. Included papers were broadly consonant in identifying the need for activity to specify and support public involvement across all four governance functions of stewardship, financing, creating and sustaining resources, and research production and use. However, different visions for public involvement, and the activity required to implement it and achieve impact, were particularly evident with respect to the stewardship function, which seeks to set overall directions for research while addressing the potentially competing demands of a system's many constituents. CONCLUSIONS: A governance perspective has considerable value for public involvement in health research systems, supporting efforts to coordinate and institutionalise the burgeoning public involvement enterprise. Furthermore, it highlights challenges for what is, ultimately, a highly political intervention, suggesting that diverse publics must be both involved within health research systems and enrolled as governors of them.

Expanding the clinical role of community pharmacy: A qualitative ethnographic study of medication reviews in Ontario, Canada.

Medication reviews by community pharmacists are an increasingly common strategy to improve medication management for chronic conditions, and are part of wider efforts to make more effective use of community-based health professionals. To identify opportunities to optimize the medication review program in Ontario, Canada, we explored how providers and clients interpret and operationalize medication reviews within everyday community pharmacy practice. We conducted a qualitative ethnographic study at four pharmacies in Ontario, Canada, including non-participant observation of provider and client activities and interactions with specific attention to medication reviews, as well as brief ethnographic interviews with providers and clients, and in-depth, semi-structured interviews with providers. We report on 72h of field research, observation of 178 routine pharmacist-client interactions and 29 medication reviews, 62 brief ethnographic interviews with providers and clients, and 7 in-depth, semi-structured interviews with providers. We found that medication reviews were variably conducted across the dimensions of duration, provider type, location, and interaction style, and that local contexts and system-wide developments influence their meaning and practice. Medication reviews are exemplary of policy efforts to enhance the role of community pharmacies within health systems and the scope of practice of pharmacists as healthcare professionals. Our study highlights the importance of the local structure of community pharmacy practice and the clinical aspirations of pharmacists in the delivery of medication reviews.

A secondary benefit: the reproductive impact of carrier results from newborn screening for cystic fibrosis.

PURPOSE: Newborn screening (NBS) for cystic fibrosis (CF) can identify carriers, which is considered a benefit that enables reproductive planning. We examined the reproductive impact of carrier result disclosure of NBS for CF. METHODS: We surveyed mothers of carrier infants after NBS (Time 1) and 1 year later (Time 2) to ascertain intended and reported communication of their infants' carrier results to relatives, carrier testing for themselves/other children, and reproductive decisions. A sub-sample of mothers was also interviewed at Time 1 and Time 2. RESULTS: The response rate was 54%. A little more than half (55%) of mothers underwent carrier testing at Time 1; another 40% of those who intended to undergo testing at Time 1 underwent testing at Time 2. Carrier result communication to relatives was high (92%), but a majority of participants did not expect the results to influence family planning (65%). All interviewed mothers valued learning their infants' carrier results. Some underwent carrier testing and then shared results with family. Others did not use the results or used them in unintended ways. CONCLUSION: Although mothers valued learning carrier results from NBS, they reported moderate uptake of carrier testing and limited influence on family planning. Our study highlights the secondary nature of the benefit of disclosing carrier results of NBS.Genet Med 19 4, 403-411.