Using primary care data for research: What are the issues and potential solutions?

BACKGROUND: Interest in using primary care data for research is growing with increasing recognition of its potential for improving healthcare. Many issues exist, some inherent in the data and others external. OBJECTIVE: This paper explores the main issues associated with the use of primary care data for research and proposed solutions to address them. DISCUSSION: Issues related to the use of primary care data for research are complex. Government reimbursement system administrative data have limitations as they lack clinical detail. General practice electronic medical record data are more suitable; however, challenges include variable data quality and interoperability. There are concerns from general practices and the public about data access and use. Strategies to address these issues include incorporating best-practice principles, implementing standards and data quality frameworks, creating partnerships between data custodians and ensuring robust governance systems exist. Leadership and the will of key stakeholders to reform, with governmental support in implementing required actions, must be prioritised.

Undercounting diagnoses in Australian general practice: a data quality study with implications for population health reporting.

BACKGROUND: Diagnosis can often be recorded in electronic medical records (EMRs) as free-text or using a term with a diagnosis code. Researchers, governments, and agencies, including organisations that deliver incentivised primary care quality improvement programs, frequently utilise coded data only and often ignore free-text entries. Diagnosis data are reported for population healthcare planning including resource allocation for patient care. This study sought to determine if diagnosis counts based on coded diagnosis data only, led to under-reporting of disease prevalence and if so, to what extent for six common or important chronic diseases. METHODS: This cross-sectional data quality study used de-identified EMR data from 84 general practices in Victoria, Australia. Data represented 456,125 patients who attended one of the general practices three or more times in two years between January 2021 and December 2022. We reviewed the percentage and proportional difference between patient counts of coded diagnosis entries alone and patient counts of clinically validated free-text entries for asthma, chronic kidney disease, chronic obstructive pulmonary disease, dementia, type 1 diabetes and type 2 diabetes. RESULTS: Undercounts were evident in all six diagnoses when using coded diagnoses alone (2.57-36.72% undercount), of these, five were statistically significant. Overall, 26.4% of all patient diagnoses had not been coded. There was high variation between practices in recording of coded diagnoses, but coding for type 2 diabetes was well captured by most practices. CONCLUSION: In Australia clinical decision support and the reporting of aggregated patient diagnosis data to government that relies on coded diagnoses can lead to significant underreporting of diagnoses compared to counts that also incorporate clinically validated free-text diagnoses. Diagnosis underreporting can impact on population health, healthcare planning, resource allocation, and patient care. We propose the use of phenotypes derived from clinically validated text entries to enhance the accuracy of diagnosis and disease reporting. There are existing technologies and collaborations from which to build trusted mechanisms to provide greater reliability of general practice EMR data used for secondary purposes.

Public comprehension of privacy protections applied to health data shared for research: An Australian cross-sectional study.

INTRODUCTION: Sharing of health data for secondary uses such as research and public policy development is common. There are many potential benefits, but also risks if information about an individual's health record can be inferred. Studies show cautious willingness amongst the public to share health data for beneficial purposes, as long as they are confident in their data privacy and security. There has been relatively little research into whether the technical guarantees of privacy-preserving technologies are well understood by people asked to consent to sharing their data. OBJECTIVES: We sought to assess how accurately people understood the effectiveness of techniques for protecting the privacy of shared health data. METHODS: We designed an online survey describing a data-sharing scenario motivated by medical research where data could be shared: raw (including identifiers), de-identified (using k-anonymity), aggregated, and differential privacy applied to aggregated data. Respondents were asked about willingness to share their data, and how likely it was that they could be identified. They were also asked for the meaning of 'de-identified' and whether they would agree to sharing information for 'not solely commercial' purposes, thus mirroring the consent language used by Australia's My Health Record system. RESULTS: Our findings revealed substantial tolerance for researcher use of health data with consistent preference to share data when better privacy-preserving techniques were employed. This was not entirely consistent as slight preference was shown for aggregated data over differential privacy, despite differential privacy being objectively more secure. We conjecture this was because differential privacy and its benefits were not well understood. Similarly, respondents showed no consistent understanding of the term 'de-identified', indicating that this needs to be carefully defined in contexts that seek consent. Finally, many respondents who indicated a willingness to share for purposes that were 'not solely commercial' nevertheless rejected at least some specific scenarios that mixed research and commercial objectives, again indicating a possible gap in their understanding of the terms. CONCLUSIONS: We found overall preference for better privacy protection of data as a precondition for secondary use, but limitations in respondents' understanding of key terminology and the differing privacy guarantees of available techniques. Further effort is needed to word secondary data use consent policies to ensure public understanding of commonly used terms and methods, if genuinely informed consent for data sharing is to be gained.

Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians.

BACKGROUND: Most people receive most of their health care in in Australia in primary care, yet researchers and policymakers have limited access to resulting clinical data. Widening access to primary care data and linking it with hospital or other data can contribute to research informing policy and provision of services and care; however, limitations of primary care data and barriers to access curtail its use. The Australian Health Research Alliance (AHRA) is seeking to build capacity in data-driven healthcare improvement; this study formed part of its workplan. METHODS: The study aimed to build capacity for data driven healthcare improvement through identifying primary care datasets in Australia available for secondary use and understand data quality frameworks being applied to them, and factors affecting national capacity for secondary use of primary care data from the perspectives of data custodians and users. Purposive and snowball sampling were used to disseminate a questionnaire and respondents were invited to contribute additional information via semi-structured interviews. RESULTS: Sixty-two respondents collectively named 106 datasets from eclectic sources, indicating a broad conceptualisation of what a primary care dataset available for secondary use is. The datasets were generated from multiple clinical software systems, using different data extraction tools, resulting in non-standardised data structures. Use of non-standard data quality frameworks were described by two-thirds of data custodians. Building trust between citizens, clinicians, third party data custodians and data end-users was considered by many to be a key enabler to improve primary care data quality and efficiencies related to secondary use. Trust building qualities included meaningful stakeholder engagement, transparency, strong leadership, shared vision, robust data security and data privacy protection. Resources to improve capacity for primary care data access and use were sought for data collection tool improvements, workforce upskilling and education, incentivising data collection and making data access more affordable. CONCLUSIONS: The large number of identified Australian primary care related datasets suggests duplication of labour related to data collection, preparation and utilisation. Benefits of secondary use of primary care data were many, and strong national leadership is required to reach consensus on how to address limitations and barriers, for example accreditation of EMR clinical software systems and the adoption of agreed data and quality standards at all stages of the clinical and research data-use lifecycle. The study informed the workplan of AHRA's Transformational Data Collaboration to improve partner engagement and use of clinical data for research.

The impact of public performance reporting on cancer elective surgery waiting times: a data linkage study.

BACKGROUND: Excessive waiting times for cancer elective surgery are a concern in publicly funded healthcare systems. Several countries including Australia have introduced healthcare reforms involving time-based targets and public performance reporting (PPR) of hospital data. However, there is mixed evidence of their benefits. We sought to examine the impact of targets and PPR of cancer elective surgery waiting times on access to breast, bowel and lung cancer elective surgery. METHODS: We analysed routinely-collected linked data on admissions and waiting times for patients aged 15 years or over (n = 199,885) who underwent cancer surgery in a public hospital in Victoria, Australia over a 10-year period. We conducted difference-in-differences analyses to compare waiting times before (2006-07 to 2011-12) and after (2012-13 to 2015-16) the introduction of PPR in meeting these targets. RESULTS: Across all cancer types, urgent patients were all treated within 30 days before and after PPR. Following PPR, there was a slight increase in the mean waiting times across all cancer types and urgency categories. Patients with lung cancer waited on average two and half days longer for treatment and patients with breast cancer waited on average half-a-day less. There was no effect of PPR on waiting times for patients with bowel cancer across urgency categories. CONCLUSIONS: Our findings suggest that time-based targets and PPR had minimal impact on surgical waiting times. This may be due to reasonable waiting times prior to PPR, improved efficiency being masked by 20% growth in the population, lack of public knowledge that waiting times are publicly reported, or lack of real-time reporting to drive behavioural change. The use of generic elective surgery recommended waiting time measures for cancer is discussed.

Big data or big risk: general practitioner, practice nurse and practice manager attitudes to providing de-identified patient health data from electronic medical records to researchers.

Research utilising de-identified patient health information extracted from electronic medical records (EMRs) from general practices has steadily grown in recent years in response to calls to increase use of health data for research and other secondary purposes in Australia. Little is known about the views of key primary care personnel on this issue, which are important, as they may influence whether practices agree to provide EMR data for research. This exploratory qualitative study investigated the attitudes and beliefs of general practitioners (GPs), practice managers (PMs) and practice nurses (PNs) around sharing de-identified EMR patient health information with researchers. Semi-structured interviews were conducted with 11 participants (6 GPs, 3 PMs and 2 PNs) recruited via purposive sampling from general practices in Victoria, Australia. Transcripts were coded and thematically analysed. Participants were generally enthusiastic about research utilising de-identified health information extracted from EMRs for altruistic reasons, including: positive effects on primary care research, clinical practice and population health outcomes. Concerns raised included patient privacy and data breaches, third-party use of extracted data and patient consent. These findings can provide guidance to researchers and policymakers in designing and implementing projects involving de-identified health information extracted from EMRs.

Public disclosure of hospital clinicians' performance data: insights from medical directors.

Objective This study gathered information from public hospital chief medical officers to better understand underlying mechanisms through which public reporting affects institutional behavioural change and decision making towards quality improvement. Methods This qualitative study used thematic analysis of 17 semistructured, in-depth interviews among a peak group of medical directors representing 26 health services in Victoria, Australia. Results The medical directors indicated a high level of in-principle support for public reporting of identifiable, individual clinician-level data. However, they also described varying conceptual understanding of what public reporting of performance data is. Overall, they considered public reporting of individual clinicians' performance data a means to improve health care quality, increase transparency and inform consumer healthcare decision making. Most identified caveats that would need to be met before such data should be publicly released, in particular the need to resolve issues around data quality and timeliness, context and interpretation and ethics. Acknowledgement of the public's right to access individual clinician-level data was at odds with some medical directors' belief that such reporting may diminish trust between clinicians and their employers, thus eroding rather than motivating quality improvement. Conclusions Public reporting of identifiable individual healthcare clinicians' performance data is an issue that merits robust research and debate given the effects such reporting may have on doctors and on hospital quality and safety. What is known about the topic? The public reporting of individual clinician-level data is a mechanism used in some countries, but not in Australia, for increasing health care transparency and quality. Clinician-level public reporting of doctors' performance attracts contention and debate in Australia. What does this paper add? This paper informs debate around the public reporting of individual clinician-level performance data. Among a discrete cohort of senior hospital administrators in Victoria, Australia, there was strong in-principle support for such public reporting as a means to improve hospital quality and safety. What are the implications for practitioners? Before public reporting of individual clinician performance data could occur in Australia, resolution of issues would be required relating to legality and ethics, data context and interpretation, data quality and timeliness.

Integrating Traditional and Complementary Medicine with National Healthcare Systems for Universal Health Coverage in Asia and the Western Pacific.

In the WHO Western Pacific Region, traditional medicine has extensively been used by communities as part of primary health care which is critical foundation for achieving universal health coverage (UHC). This paper conceptualizes integration of traditional and complementary medicine (T&CM) into national health systems and explores how such integration can contribute to pathways toward UHC. Integration has been variously conceptualized at health system, service delivery, and consumer levels. Integration can be conceptualized based on the level of institutionalization of T&CM in national health systems (i.e. regulation of T&CM, education system, monitoring and health financial scheme). According to it, countries and areas of the Region can be categorized: countries with: 'well-established integration strategies'; 'in-process of developing and implementing integration policies'; 'mixed-level of integration'; or 'indigenous traditional medicine practiced outside the national healthcare system'. Integration of T&CM may offer pathways to advance five health system attributes essential to achieve UHC, namely: quality; efficiency; equity; accountability; and sustainability and resilience. It can contribute to improving quality of healthcare services through regulation of T&CM products, practitioners and services used by communities; meeting population needs in ageing population and managing non-communicable diseases; improving equitable access to care through health insurance coverage of T&CM; improving accountability by monitoring and use of data for informed-policy decisions on T&CM; and strengthening sustainability and resilience through maximizing potentials of T&CM in managing outbreaks of infectious diseases and disasters. Depending on the level of integration, actions to move forward integration of T&CM as a pathway toward UHC will be various.

Gathering data for decisions: best practice use of primary care electronic records for research.

In Australia, there is limited use of primary health care data for research and for data linkage between health care settings. This puts Australia behind many developed countries. In addition, without use of primary health care data for research, knowledge about patients' journeys through the health care system is limited. There is growing momentum to establish "big data" repositories of primary care clinical data to enable data linkage, primary care and population health research, and quality assurance activities. However, little research has been conducted on the general public's and practitioners' concerns about secondary use of electronic health records in Australia. International studies have identified barriers to use of general practice patient records for research. These include legal, technical, ethical, social and resource-related issues. Examples include concerns about privacy protection, data security, data custodians and the motives for collecting data, as well as a lack of incentives for general practitioners to share data. Addressing barriers may help define good practices for appropriate use of health data for research. Any model for general practice data sharing for research should be underpinned by transparency and a strong legal, ethical, governance and data security framework. Mechanisms to collect electronic medical records in ethical, secure and privacy-controlled ways are available. Before the potential benefits of health-related data research can be realised, Australians should be well informed of the risks and benefits so that the necessary social licence can be generated to support such endeavours.

The impact of Australian healthcare reforms on emergency department time-based process outcomes: An interrupted time series study.

BACKGROUND: In 2011, the Australian government introduced national healthcare reforms aimed at increasing the timeliness and quality of hospital care. The healthcare reforms included, but were not limited to, emergency department (ED) time-based targets, financial incentives, and public performance reporting of hospital data. We sought to evaluate the impact of the national healthcare reforms on ED time-based process outcomes. METHODS: A quasi-experimental study of ED presentations from 2006 to 2016 in the state of Victoria, Australia. Uncontrolled, interrupted time-series analyses were used to evaluate, by hospital peer groups, the effect of national healthcare reforms on: patient wait times for treatment; treatment within recommended time; and patient departure within four hours of arrival in ED. RESULTS: There were small improvements in ED time-based process outcomes following the introduction of the national healthcare reforms. These occurred in most hospital peer groups immediately and over the longer term, across the various triage categories. The largest improvements occurred in small hospitals and smallest improvements in medium sized hospitals. ED time-based targets, now abolished by the Australian government, were not achieved in any hospital peer groups. CONCLUSIONS: Our findings suggest that national healthcare reforms had the potential to prompt fundamental changes in ED processes leading to significant improvements in ED performances across most hospital peer groups but were generally unable to reach the ED targets imposed nationally. ED performances also varied by hospital peer groups. Attention to ED time-based process outcomes within hospital peer groups may provide insights into hospital practices that could improve the quality and efficiency of ED care.

Evidence based practice in traditional & complementary medicine: An agenda for policy, practice, education and research.

OBJECTIVE: To develop a policy, practice, education and research agenda for evidence-based practice (EBP) in traditional and complementary medicine (T&CM). METHODS: The study was a secondary analysis of qualitative data, using the method of roundtable discussion. The sample comprised seventeen experts in EBP and T&CM. The discussion was audio-recorded, and the transcript analysed using thematic analysis. RESULTS: Four central themes emerged from the data; understanding evidence and EBP, drivers of change, interpersonal interaction, and moving forward. Captured within these themes were fifteen sub-themes. These themes/sub-themes translated into three broad calls to action: (1) defining terminology, (2) defining the EBP approach, and (3) fostering social movement. These calls to action formed the framework of the agenda. CONCLUSIONS: This analysis presents a potential framework for an agenda to improve EBP implementation in T&CM. The fundamental elements of this action plan seek clarification, leadership and unification on the issue of EBP in T&CM.

Public performance reporting and hospital choice: a cross-sectional study of patients undergoing cancer surgery in the Australian private healthcare sector.

OBJECTIVES: National mandatory public performance reporting (PPR) for Australian public hospitals, including measures of cancer surgery waiting times, was introduced in 2011. PPR is voluntary for private hospitals. The aims of this study were to assess whether PPR of hospital data is used by patients with breast, bowel or lung cancer when selecting a hospital for elective surgery and how PPR could be improved to meet their information needs. DESIGN: A national cross-sectional postal questionnaire. SETTING: Australian private healthcare sector. PARTICIPANTS: Private patients with breast, bowel or lung cancer who attended a public or private hospital for elective surgery (n=243) in 2016. OUTCOME MEASURES: Patients' choice of hospital, use of PPR information and preferred areas of PPR information. Descriptive and conventional qualitative content analyses were conducted. RESULTS: Two hundred and twenty-eight respondents (94%) attended a private hospital. Almost half could choose a hospital. Choice of hospital was not influenced by PPR data (92% unaware) but by their specialist (90%). Respondents considered PPR to be important (71%) but they did not want to see the information, preferring their general practitioners (GPs) to tell them about it (40%). Respondents considered surgery costs (59%), complications (58%) and recovery success rates (57%) to be important areas of information that should be publicly reported. Almost half suggested that quality indicators should be reported at the individual clinician level. Analysis of the open-ended questions identified four themes: (1) decision-making factors; (2) data credibility; (3) unmet information needs and (4) unintended consequences. CONCLUSIONS: PPR of hospital data had no substantial impact on patients' choice of hospital. Nonetheless, many respondents expressed interest in using it in future. To increase PPR awareness and usability, personalised and integrated information on cost and quality of hospitals is required. Dissemination of PPR information via specialists and GPs could assist patients to interpret the data and support decision-making.

"What is meant by public?": Stakeholder views on strengthening impacts of public reporting of hospital performance data.

Public reporting of hospital performance data is a developing area that is gaining increased attention. This is the first study to explore a range of stakeholder opinions on how such public reporting could be strengthened in Australia. Thirty-four semi-structured interviews were conducted with a purposive sample of expert healthcare consumer, provider and purchaser informants who worked in a variety of senior roles and had knowledge of or involvement in public reporting of hospital data within the public or private healthcare sectors. Informants from all Australian states, territory and national jurisdictions participated. Thematic analysis was used to gain an overview of experts' opinions to inform policy and systems-development for strengthening foundational frameworks for public reporting of health services performance. Themes arising were synthesised to generate explanatory figures to highlight key areas for strengthening public reporting. Our findings suggest that in Australia there is a lack of agreement on what the objectives and who the audience are for public reporting of hospital performance data. Without this shared understanding it is difficult to strengthen frameworks and impacts of public reporting. When developing frameworks for public reporting of hospital data in Australia, more explicit definition of what or who are the 'public' is needed along with identification of barriers, desired impacts, data needs, and data collection/reporting/feedback mechanisms. All relevant stakeholders should be involved in design of public reporting frameworks. Offering multiple systems of public reporting, each tailored to particular audiences, might enable greater impact of reporting towards improved hospital quality and safety, and consumer knowledge to inform treatment decisions. This study provides an overview of perspectives, but further research is warranted to develop PR frameworks that can generate greatest impacts for the needs of various audiences.

The use of public performance reporting by general practitioners: a study of perceptions and referral behaviours.

BACKGROUND: Public performance reporting (PPR) of hospital data aims to improve quality of care in hospitals and to inform consumer choice. In Australia, general practitioners (GPs) are gatekeepers to secondary care with patients requiring their referral for non-emergency access. Despite their intermediary role, GPs have been generally overlooked as potential users of PPR of hospital data, with the majority of the PPR research focussing on consumers, surgeons and hospitals. METHODS: We examined the use of PPR of hospital data by GPs when referring patients to hospitals. Semi-structured interviews were conducted with 40 GPs, recruited via the Victorian Primary Care Practice-Based Research Network and GP teaching practices in Victoria, Australia. The interviews were recorded, transcribed and analysed thematically. RESULTS: We found that the majority of GPs did not use PPR when referring patients to hospitals. Instead, they relied mostly on informal sources of information such as their own or patients' previous experiences. Barriers that prevented GPs' use of PPR in their decision making included: lack of awareness and accessibility; perceived lack of data credibility; restrictive geographical catchments for certain hospitals; limited choices of public hospitals in regional and rural areas; and no mandatory PPR for private hospitals. CONCLUSIONS: Our findings suggest that lack of PPR awareness prevented GPs from using it in their referral practice. As gatekeepers to secondary care, GPs are in a position to guide patients in their treatment decisions and referrals using available PPR data. We suggest that there needs to be greater involvement by GPs in the development of hospital performance and quality indicators in Australia if GPs are to make greater use of them. The indicators require further development before GPs perceive them as valid, credible, and of use for informing their referral practices.

Public reporting of hospital performance data: views of senior medical directors in Victoria, Australia.

Objective The aim of the present study was to better understand senior medical directors' perceptions of public reporting of hospital performance data, how public reporting affects institutional behavioural change towards quality improvement and how it could be improved. Methods Interviews were undertaken with 17 medical directors representing 26 metropolitan and regional public hospitals in Victoria, Australia, between June and August 2016. Data were analysed thematically. Results Medical directors are well placed to comment on clinical and administrative aspects of quality, safety and performance monitoring in public hospitals. Their responses largely suggested that public reporting of hospital performance data in Australia is immature and not fulfilling its potential. There was little consensus among informants around what public reporting is, who it is for or its purpose. Although public reporting was considered to have important functions for hospitals and consumers, it was generally considered to lack robustness and have underutilised potential to inform consumers, build trust and drive quality and performance improvements within hospitals. Conclusions The next steps needed to advance public reporting of hospital performance data in Australia include engaging clinicians and patients in selection and development of metrics, improving timeliness of reporting, and improving communication of information so that it is accessible and meaningful for different audiences. What is known about the topic? Public reporting of hospital performance data is a mechanism increasingly used in the Australian health system, but it has attracted little research. What does this paper add? This paper reveals a lack of shared understanding among medical directors in Victoria, Australia, on what public reporting of hospital performance data is, who it is for and its purpose. The paper highlights the potential importance of public reporting of hospital performance data for rural and regional healthcare consumers and how it may be strengthened. What are the implications for practitioners? Stronger systems of public reporting of hospital performance data have the potential to increase consumer engagement and improve hospital performance, quality and safety. Awareness of the discourse around public reporting of hospital performance data can increase practitioners' engagement in debate and development of reporting systems.

Medical directors' perspectives on strengthening hospital quality and safety.

Purpose The purpose of this paper is to understand the concerns and factors that impact on hospital quality and safety, particularly related to use of performance data, within a setting of devolved governance. Design/methodology/approach This qualitative study used thematic analysis of interviews with public hospital medical directors. For additional context, findings were framed by themes from a review of hospital safety and quality in the same jurisdiction. Findings Varying approaches and levels of complexity were described about what and how performance data are reviewed, prioritised, and quality improvements implemented. Although no consistent narrative emerged, facilitators of improvement were suggested relating to organisational culture, governance, resources, education, and technologies. These hospital-level perspectives articulate with and expand on the system-level themes in a state-wide review of hospital safety and quality. Research limitations/implications The findings are not generalisable, but point to an underlying absence of system-wide agreement on how to perceive, retrieve, analyse, prioritise and action hospital performance data. Practical implications Lack of electronic medical records and an inefficient incident reporting system limits the extent to which performance and incident data can be analysed, linked and shared, thus limiting hospital performance improvement, oversight and learning. Social implications Variable approaches to quality and safety, standards of care, and hospital record keeping and reporting, mean that healthcare consumers might expect inconsistency across Victorian hospitals. Originality/value The views of medical directors have been little researched. This work uses their voice to better understand contextual factors that situate and impact on hospital quality and safety towards understanding the mixed effectiveness of hospital quality improvement strategies.

Perceived barriers to effective implementation of public reporting of hospital performance data in Australia: a qualitative study.

BACKGROUND: Public reporting of government funded (public) hospital performance data was mandated in Australia in 2011. Studies suggest some benefit associated with such public reporting, but also considerable scope to improve reporting systems. METHODS: In 2015, a purposive sample of 41 expert informants were interviewed, representing consumer, provider and purchasers perspectives across Australia's public and private health sectors, to ascertain expert opinion on the utility and impact of public reporting of health service performance. Qualitative data was thematically analysed with a focus on reporting perceived strengths and barriers to public reporting of hospital performance data (PR). RESULTS: Many more weaknesses and barriers to PR were identified than strengths. Barriers were: conceptual (unclear objective, audience and reporting framework); systems-level (including lack of consumer choice, lack of consumer and clinician involvement, jurisdictional barriers, lack of mandate for private sector reporting); technical and resource related (including data complexity, lack of data relevance consistency, rigour); and socio-cultural (including provider resistance to public reporting, poor consumer health literacy, lack of consumer empowerment). CONCLUSIONS: Perceptions of the Australian experience of PR highlight important issues in its implementation that can provide lessons for Australia and elsewhere. A considerable weakness of PR in Australia is that the public are often not considered its major audience, resulting in information ineffectually framed to meet the objective of PR informing consumer decision-making about treatment options. Greater alignment is needed between the primary objective of PR, its audience and audience needs; more than one system of PR might be necessary to meet different audience needs and objectives. Further research is required to assess objectively the potency of the barriers to PR suggested by our panel of informants.