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On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
On the outside looking in.
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On the outside looking in.

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On the outside looking in. …

On the outside looking in.

HTA_AUS: Improving opportunities for patient and consumer engagement in HTA in Australia

Published in: Health & Medicine
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  • 1. On the outside looking inHTA_AUS:Improving opportunities for patientand consumer engagement in HTA inAustralia David Grainger, Global Public Policy Director, Eli Lilly and Company (on behalf of the HTA_Aus group)Copyright Eli Lilly and Company 2012 1
  • 2. On the outside looking in Youve closed a door in front of me I wait patiently outside And as the minutes tick away I feel my anger rise And whos the object of my rage? And whos not being fair? Is it you for your indifference? Or me for just standing there? Copyright: Alison Krause and Tim O’Brien2011Copyright Eli Lilly and Company 2012 2
  • 3. So what is the problem?• Mechanisms now exist in Australia for patient / consumer representation on key HTA committees (Pharmaceutical Benefits Advisory Committee and the Medical Benefits Advisory Committee)• PBAC also has provision for patients / consumers to make submissions related to items listed on the agenda for the next meeting, via a template available on the DOH website• But... – Overall HTA process is not well understood – Time from agenda publication to submission cut off is short (4 weeks) – Patient advocacy groups are not well resourced and struggle to develop submissions that are useful to the PBACCopyright Eli Lilly and Company 2012 3
  • 4. Who should contribute to solutions?• Multiple potential stakeholders with an interest in an improved process for patient and consumer input: – patient advocacy groups – “peak body” for health consumer interests (Consumers Health Forum) – the Department of Health and Ageing – the pharmaceutical and devices industry and their associationsCopyright Eli Lilly and Company 2012 4
  • 5. Who should contribute to solutions?• Multiple potential stakeholders with an interest in an improved process for patient and consumer input: – patient advocacy groups – “peak body” for health consumer interests (Consumers Health Forum) – the Department of Health and Ageing – the pharmaceutical and devices industry – “peak body” for the pharmaceutical industry (Medicines Australia)• BUT... none of the above appear to have prioritised this issue – all have had multiple challenges in past 2 years regarding regulatory and reimbursement reforms – all have increasingly constrained resources to applyCopyright Eli Lilly and Company 2012 5
  • 6. The formation of AUS_HTA• An informal “coming together” of interested parties, under the umbrella of the HTAi Special Interest Group on patient engagement• Offering a solution where formal bodies are unable to focus• Able to act as individuals rather than representing specific positions or organisations, with a short and medium term agenda• Includes some key individuals with passion for this topic: – patient and consumer representatives on the PBAC, MSAC, regulatory and Prostheses committees (bring extensive experience) – past and current chairs of the PBAC – representatives of 3 individual pharmaceutical companies – CEO of medical technology association (representing devices and related technologies)• No financial commitments at this point, but significant “goodwill”Copyright Eli Lilly and Company 2012 6
  • 7. Proposed construct for improving engagment OTHER MSAC PBAC Awareness Level 1 Response to AgendaDepth & Proximity to Decision Education Level 2 Deliberative Inputs (e.g. Consumer Impact Support Statements) Level 3 Forward looking (e.g. Horizon Scanning) Copyright Eli Lilly and Company 2012 7
  • 8. DefinitionsAwareness• Visibility consumers have of the mechanisms and opportunities available to them to provide input and feedback.Education• HTA: Training provided to consumers explaining health technology assessment and the role they can play.• Process: How and in what format are submission summaries provided to consumers for feedback AND how they are asked to provide feedback.• Interpretation: Technical assistance provided to consumers to allow them to understand submissions and provide meaningful input.Support • Assist organisations to find, understand and interpret information and to navigate the currently available options for input. •Consider and recommend potential improvements to existing processes and development of new ones; the role of companies as an information source for consumers to provide input; Industry code and legislative barriers; tools that can be accessed by consumers to help facilitate feedback. Copyright Eli Lilly and Company 2012 8
  • 9. Practical steps to date• Established a process for review of PBAC agenda when published, followed by approach to relevant patient advocacy organisations• Support for those organisations to consider most relevant information and organise into a focused submission• Feedback loop with the Chair of the PBAC committed to provide post-meeting perspectives on usefulness of patient submissions• Acknowledgment that the time from publication of the PBAC agenda to cut off for patient and consumer submissions is too short – approach has been made to Medicines Australia to gain industry agreement to extend this• Acknowledgement that there is scope for formal quality research to further inform the contribution possible from patients and consumersCopyright Eli Lilly and Company 2012 9
  • 10. Next steps• Using a formal description of HTA_Aus and its objectives, develop a “request for proposals” from academic groups within Australia, to partner and develop a research agenda• Considering options for a formal funding grant request under one of several options in Australia• Considering how to better deal with “problem areas”, notably oncology, rare diseases and co-dependent technologies• Increasing the interactions with stakeholders in the devices, diagnostics and procedures areas• Considering available resources for education on “medicines development, regulatory and reimbursement processes”Copyright Eli Lilly and Company 2012 10
  • 11. Conclusions• All stakeholders in a HTA “system” acknowledged the need for improvement, BUT...• Constrained resources meant no one was actually moving things forward• Possible to create a “coalition of the willing” to substitute for formal action• All HTA systems are likely to have room for improvement in regard to patient and public engagement...• Careful and selective efforts CAN make a difference!• Need for caution in regard to perceptions of self-interest and ensure good governance as the effort grows in size and transparencyCopyright Eli Lilly and Company 2012 11

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