Disinvestment policy and the public funding of assisted reproductive technologies: outcomes of deliberative engagements with three key stakeholder groups

BACKGROUND Measures to improve the quality and sustainability of healthcare practice and provision have become a policy concern. In addition, the involvement of stakeholders in health policy decision-making has been advocated, as complex questions arise around the structure of funding arrangements in a context of limited resources. Using a case study of assisted reproductive technologies (ART), deliberative engagements with a range of stakeholder groups were held on the topic of how best to structure the distribution of Australian public funding in this domain. METHODS Deliberative engagements were carried out with groups of ART consumers, clinicians and community members. The forums were informed by a systematic review of ART treatment safety and effectiveness (focusing, in particular, on maternal age and number of treatment cycles), as well as by international policy comparisons, and ethical and cost analyses. Forum discussions were transcribed and subject to thematic analysis. RESULTS Each forum demonstrated stakeholders’ capacity to understand concepts of choice under resource scarcity and disinvestment, and to countenance options for ART funding not always aligned with their interests. Deliberations in each engagement identified concerns around ‘equity’ and ‘patient responsibility’, culminating in a broad preference for (potential) ART subsidy restrictions to be based upon individual factors rather than maternal age or number of treatment cycles. Community participants were open to restrictions based upon measures of body mass index (BMI) and smoking status, while consumers and clinicians saw support to improve these factors as part of an ART treatment program, as distinct from a funding criterion. All groups advocated continued patient co-payments, with measures in place to provide treatment access to those unable to pay (namely, equity of access). CONCLUSIONS Deliberations yielded qualitative, socially-negotiated evidence required to inform ethical, accountable policy decisions in the specific area of ART and health care more broadly. Notably, reductionist, deterministic characterizations of stakeholder ‘self-interest’ proved unfounded as each group sought to prioritise universal values (in particular, ‘equity’ and ‘responsibility’) over specific, within-group concerns. Our results - from an emotive case study in ART - highlight that evidence-informed disinvestment decision-making is feasible, and potentially less controversial than often presumed.Katherine Hodgetts, Janet E Hiller, Jackie M Street, Drew Carter, Annette J Braunack-Mayer, Amber M Watt, John R Moss, Adam G Elshaug for the ASTUTE Health study grou

The ASTUTE Health study protocol: deliberative stakeholder engagements to inform implementation approaches to healthcare disinvestment

BACKGROUND Governments and other payers are yet to determine optimal processes by which to review the safety, effectiveness, and cost-effectiveness of technologies and procedures that are in active use within health systems, and rescind funding (partially or fully) from those that display poor profiles against these parameters. To further progress a disinvestment agenda, a model is required to support payers in implementing disinvestment in a transparent manner that may withstand challenge from vested interests and concerned citizens. Combining approaches from health technology assessment and deliberative democratic theory, this project seeks to determine if and how wide stakeholder engagement can contribute to improved decision-making processes, wherein the views of both vested and non-vested stakeholders are seen to contribute to informing policy implementation within a disinvestment context. METHODS/DESIGN Systematic reviews pertaining to illustrative case studies were developed and formed the evidence base for discussion. Review findings were presented at a series of deliberative, evidence-informed stakeholder engagements, including partisan (clinicians and consumers) and non-partisan (representative community members) stakeholders. Participants were actively facilitated towards identifying shared and dissenting perspectives regarding public funding policy for each of the case studies and developing their own funding models in response to the evidence presented. Policy advisors will subsequently be invited to evaluate disinvestment options based on the scientific and colloquial evidence presented to them, and to explore the value of this information to their decision-making processes with reference to disinvestment. DISCUSSION Analysis of the varied outputs of the deliberative engagements will contribute to the methodological development around how to best integrate scientific and colloquial evidence for consideration by policy advisors. It may contribute to the legitimization of broad and transparent stakeholder engagement in this context. It is anticipated that decision making will benefit from the knowledge delivered through informed deliberation with engaged stakeholders, and this will be explored through interviews with key decision makers.Amber M Watt, Janet E Hiller, Annette J Braunack-Mayer, John R Moss, Heather Buchan, Janet Wale, Dagmara E Riitano, Katherine Hodgetts, Jackie M Street and Adam G Elshaug, for the ASTUTE Health study grou

A first census of skin cancer specialist nurses across UK secondary care trusts.

Acknowledgements: We would like to thank all colleagues who took the time to complete this census. Thanks specifically to Emma Cargill, Caroline Hough and Vicky McMorran who helped to test the Census before going live. Thank you also to Delia Sworm for valuable feedback regarding the Census findings. Tim Dean (BASCNS) and Virginia Melesi (Transformation Lead, Eastern Region Cancer Alliance) assisted in disseminating the Census e-survey. JR was awarded a 2021 British Association of Dermatology elective prize for this project.BACKGROUND: Skin cancer specialist nurses (SCSNs) support patients and work alongside healthcare professionals throughout the care pathway. Skin cancer management is rapidly evolving, with increasing and more complex treatment options now available, so the need for patient support is growing. While SCSNs are a major source of that support, the provision of SCSN resource across the UK has never previously been assessed. We therefore undertook a first SCSN census on 1st June 2021. METHODS: An electronic survey was disseminated to UK hospital trusts and registered skin cancer healthcare professionals. Responses were identifiable only by the respective trust name. RESULTS: 112 responses from 87 different secondary care trusts were received; 92% of trusts reporting having at least 1 established SCSN post. Average SCSN staffing per trust was 2.4 (range 0-7) whole time equivalents, managing an average caseload of 83 (range 6-400) patients per week. SCSN workload had increased in 82% hospitals in the previous year and 30% of trusts reported being under-resourced. Most SCSN time was spent managing melanoma (as opposed to non-melanoma skin cancer) patients linked to surgical services. Regional variations existed, particularly associated with provision of lymphoedema services, nurse prescribing skills and patient access to clinical trials. The COVID-19 pandemic was associated with a marked increase in SCSN-led telemedicine clinics, but loss of training and education opportunities. CONCLUSIONS: SCSNs based in secondary care hospitals play a major role supporting both clinicians and patients throughout the care pathway. This first UK census confirmed that SCSN workload is increasing and in one third of hospital trusts, the work was reported to outstrip the staffing available to manage the volume of work. Regional variations in SCSN resource, workload and job role, as well as availability of certain skin cancer services were identified, providing valuable information to healthcare commissioners concerned with service improvement

A first census of skin cancer specialist nurses across UK secondary care trusts

Abstract Background Skin cancer specialist nurses (SCSNs) support patients and work alongside healthcare professionals throughout the care pathway. Skin cancer management is rapidly evolving, with increasing and more complex treatment options now available, so the need for patient support is growing. While SCSNs are a major source of that support, the provision of SCSN resource across the UK has never previously been assessed. We therefore undertook a first SCSN census on 1st June 2021. Methods An electronic survey was disseminated to UK hospital trusts and registered skin cancer healthcare professionals. Responses were identifiable only by the respective trust name. Results 112 responses from 87 different secondary care trusts were received; 92% of trusts reporting having at least 1 established SCSN post. Average SCSN staffing per trust was 2.4 (range 0–7) whole time equivalents, managing an average caseload of 83 (range 6–400) patients per week. SCSN workload had increased in 82% hospitals in the previous year and 30% of trusts reported being under-resourced. Most SCSN time was spent managing melanoma (as opposed to non-melanoma skin cancer) patients linked to surgical services. Regional variations existed, particularly associated with provision of lymphoedema services, nurse prescribing skills and patient access to clinical trials. The COVID-19 pandemic was associated with a marked increase in SCSN-led telemedicine clinics, but loss of training and education opportunities. Conclusions SCSNs based in secondary care hospitals play a major role supporting both clinicians and patients throughout the care pathway. This first UK census confirmed that SCSN workload is increasing and in one third of hospital trusts, the work was reported to outstrip the staffing available to manage the volume of work. Regional variations in SCSN resource, workload and job role, as well as availability of certain skin cancer services were identified, providing valuable information to healthcare commissioners concerned with service improvement

Disinvestment policy and the public funding of assisted reproductive technologies: outcomes of deliberative engagements with three key stakeholder groups

Background Measures to improve the quality and sustainability of healthcare practice and provision have become a policy concern. In addition, the involvement of stakeholders in health policy decision-making has been advocated, as complex questions arise around the structure of funding arrangements in a context of limited resources. Using a case study of assisted reproductive technologies (ART), deliberative engagements with a range of stakeholder groups were held on the topic of how best to structure the distribution of Australian public funding in this domain. Methods Deliberative engagements were carried out with groups of ART consumers, clinicians and community members. The forums were informed by a systematic review of ART treatment safety and effectiveness (focusing, in particular, on maternal age and number of treatment cycles), as well as by international policy comparisons, and ethical and cost analyses. Forum discussions were transcribed and subject to thematic analysis. Results Each forum demonstrated stakeholders’ capacity to understand concepts of choice under resource scarcity and disinvestment, and to countenance options for ART funding not always aligned with their interests. Deliberations in each engagement identified concerns around ‘equity’ and ‘patient responsibility’, culminating in a broad preference for (potential) ART subsidy restrictions to be based upon individual factors rather than maternal age or number of treatment cycles. Community participants were open to restrictions based upon measures of body mass index (BMI) and smoking status, while consumers and clinicians saw support to improve these factors as part of an ART treatment program, as distinct from a funding criterion. All groups advocated continued patient co-payments, with measures in place to provide treatment access to those unable to pay (namely, equity of access). Conclusions Deliberations yielded qualitative, socially-negotiated evidence required to inform ethical, accountable policy decisions in the specific area of ART and health care more broadly. Notably, reductionist, deterministic characterizations of stakeholder ‘self-interest’ proved unfounded as each group sought to prioritise universal values (in particular, ‘equity’ and ‘responsibility’) over specific, within-group concerns. Our results - from an emotive case study in ART - highlight that evidence-informed disinvestment decision-making is feasible, and potentially less controversial than often presumed