Sharing administrative health data with private industry: A report on two citizens' juries.

BACKGROUND: There is good evidence of both community support for sharing public sector administrative health data in the public interest and concern about data security, misuse and loss of control over health information, particularly if private sector organizations are the data recipients. To date, there is little research describing the perspectives of informed community members on private sector use of public health data and, particularly, on the conditions under which that use might be justified. METHODS: Two citizens' juries were held in February 2020 in two locations close to Sydney, Australia. Jurors considered the charge: 'Under what circumstances is it permissible for governments to share health data with private industry for research and development?' RESULTS: All jurors, bar one, in principle supported sharing government administrative health data with private industry for research and development. The support was conditional and the juries' recommendations specifying these conditions related closely to the concerns they identified in deliberation. CONCLUSION: The outcomes of the deliberative processes suggest that informed Australian citizens are willing to accept sharing their administrative health data, including with private industry, providing the intended purpose is clearly of public benefit, sharing occurs responsibly in a framework of accountability, and the data are securely held. PATIENT AND PUBLIC CONTRIBUTION: The design of the jury was guided by an Advisory Group including representatives from a health consumer organization. The jurors themselves were selected to be descriptively representative of their communities and with independent facilitation wrote the recommendations.

Medically unexplained chronic pain in Australia: difficulties for rehabilitation providers and workers in pain.

UNLABELLED: In Australia, evidence of an ageing population and a skills shortage are imminent challenges for employers [5,50]. A further concern arises from the work injury and motor accident compensation schemes, where many claims for soft tissue injuries result in permanent impairment depriving the community of otherwise productive workers [85]. In many cases, it is chronic pain that becomes the major barrier to a return to productive work. OBJECTIVE: This study will review the operation of rehabilitation within Australian Workers' and Motor Accidents compensation systems in order to identify values and attitudes underpinning the vocational rehabilitation ethos. The models underlying current practice will also be identified. METHODS: A comprehensive review of published literature and policy documents was undertaken. RESULTS: We identified a variety of contextual factors that influenced progress back into the workforce for people living with persistent pain. The conceptual models underpinning these factors within rehabilitation systems were explored. They were all driven by a strong focus on early return to work and at the same time the sustainability of rehabilitation as a profitable industry. CONCLUSIONS: Implications of these findings on the relationship between the rehabilitation provider and the person in pain are discussed. Rehabilitation professionals are influenced by and in turn influence the context in which chronic pain is experienced. Empirical data about the experiences of vocational rehabilitation professionals in Australian personal injury rehabilitation systems is lacking, yet the implications of the cost of chronic pain to the nation are significant. It is recommended that rehabilitation providers increase their awareness of the perhaps unforeseen traps within the various practice models they might be using on the goal of sustainable return to work for people living with pain.