Alicia Segrave
Good afternoon everyone. The framework that we're introducing today explains how consumer engagement happens across health technology assessment processes in Australia. It's written for everyone involved in HTA and it draws from and builds on several pieces of work that have been co-developed with stakeholders over the past few years.
Across this work, there's been a consistent message that consumer engagement in HTA needs to be more visible, clearer, earlier, more consistent and more meaningful. This framework responds to that by setting out a shared approach that reflects the views of all stakeholders. It is designed to be accessible, concise, practical, and durable, so it remains fit for purpose into the future.
So today I'll be explaining why this framework has been developed and what led to it. I'll then walk you through the key elements of the framework and share some examples of how the consumer evidence and engagement unit in the department will apply the framework in practice. And I'll also describe the next steps to finalise the framework.
We're really grateful to have Jo Watson here today. Jo is the chair of the HTA Consumer Consultative Committee. Many of you know her. She's A passionate leader in engaging consumers in health technology assessment. And Jo will share her thoughts about the framework and putting it into practice. And then we're very keen to hear your thoughts and we'll invite questions or comments.
A number of key national policies and reports have shaped the framework and reinforce the importance of strengthening consumer engagement in HTA. Central to much that we do is the National Medicines Policy. This policy emphasises person-centred care and equitable access, placing consumers at the centre of the health system and recognising their needs, experiences and priorities should guide how medicines are assessed and how they're used. The New Frontier Senate inquiry reinforced that consumer engagement should be a core part of how the HTA system operates and not an add-on.
It highlighted the need for more structured and consistent ways to involve consumers across regulatory, assessment and funding processes. Similarly, the Bringing Patient Centricity to Life industry-led report highlighted the importance of involving consumers across the full life cycle of medicines from help shape outcomes that matter to patients. And we also have the five-year strategic agreement with Medicines Australia that included a commitment to strengthen consumer engagement in reimbursement processes. So together these pieces point to a shared direction, embedding meaningful, consistent and transparent consumer engagement across the HTA system.
But building on these several major pieces of work explicitly recommended the development of a framework to strengthen and guide consumer engagement in HTA. So the Enhance HTA report published in 2024 was developed through a consumer-led working group with representation from consumers, industry and government. It called for a formal framework to incorporate and monitor consumer input across the HTA pathway and highlighted the need to move from ad hoc engagement towards a more structured and consistent approach where consumer perspectives are included early and used meaningfully alongside clinical and economic evidence. And we have the Conversations for Change consultation led by the department in 2023 which captured a wide range of stakeholder views on when, why, and how consumer engagement should be improved. It provided important insights into challenges, such as unclear opportunities to get involved, limited feedback on how input is used, and engagement happening too late in the process. But it also identified practical ways to improve, including clearer communication, better support, and more transparent processes.
And then we had the HTA policy and methods review, which reinforced these findings at a system level. It recognised that strengthening consumer involvement is essential to improving the quality, relevance and credibility of HTA and recommended more consistent and transparent approaches across the system. It also highlighted the role of consumer input in supporting better decision making and improving trust in the process.
So we have an aligned call for a clearer, more coordinated, more consistent approach to consumer engagement embedded across the HTA process and applied in, you know, not in isolated or not in inconsistent ways. I know that many of you joining us today have contributed significantly to these pieces of work. And so I'd like to acknowledge and thank you.
This is, you know, it's this collective effort and direction that has led us to and is the backbone of the framework that we're introducing today.
Minister for Health, Disability and Ageing heard what you had said and in September 2025 requested the department develop a framework with a strong focus on improving consumer engagement. From there, the team that you see today or some of us you see today from the Consumer Evidence and Engagement Unit constructed the framework under the guidance of the Health Technology Assessment Consumer.
Consultative Committee. And that committee brings together consumer members from the main Health Technology Assessment Advisory Committee and their subcommittees. And the approach that we took to developing the framework was to bring together what we had heard and recommendations in previous reports. In particular, that from the consumer-led co-designed enhanced consumer engagement process, and we also reviewed national and international approaches to stakeholder engagement. And we all know that consumer engagement in HTA isn't new. It's been evolving and growing over time. The draught framework has been mindfully designed to optimise what we already do and can do while giving space for that continuous evolution.
So with that context, the framework that we have developed is a principles-based framework, and it's practical. It's written in plain language to be easy to understand and accessible for all stakeholders. It's relevant across the whole HTA system so that it can be applied consistently by everyone involved.
regardless of their role, regardless of the type of technology, the funding program, or the HTA advisory committee. And it's not an operational manual or a set of prescriptive instructions that needs regular update. It's really intended to be a shared guide, durable and adaptable, to remain fit for purpose over time, and to support a consistent and meaningful approach to consumer engagement in HTA. So the framework developed has four key elements, who the framework is for, guiding principles, focus areas, and actions to put those focus areas into practice. So just taking a look at those elements, starting with stakeholders, the framework applies to everyone. So this includes yourselves as individual consumers and representatives of consumer organisations.
as well as government, industry, HTA advisory committee, researchers and academics and health professionals. And at the centre of the diagram is consumer engagement, drawn intentionally to reflect that engaging with consumers is not the responsibility of only one group. It's something that all stakeholders contribute to and work together. To make sure that we've got the perspectives consistently included and used.
Next, we have 5 guiding principles as the foundations for how we approach consumer engagement. The principles describe in a concise way what good engagement in HTA looks like and provide a consistent basis for how consumer engagement is carried out. The guiding principles are grounded in what we've heard from you, and they also align with principles in other stakeholder frameworks.
So we heard that consumer engagement needs to be more transparent so people will understand how the HTA process works, when they can get involved and how their input will be used. And we've reflected this under the principle of transparency.
You also emphasise the importance of earlier, purposeful and ongoing involvement rather than engagement happening too late to influence outcomes. This is captured under timeliness.
We also heard a strong message about recognising lived experience as an important form of evidence alongside clinical and economic data, and ensuring that consumers are supported to contribute, which we depict under the principle of recognition.
For the next principle, partnership, we reflect that there is a clear need for all stakeholders to work together, where consumers are treated as active participants, not just contributors. And last but certainly not least, we have inclusion, to reflect a commitment to ensuring a diverse range of voices and experiences are represented.
So the guiding principles are all equally relevant and together they underpin everything in the framework and they guide the focus areas and the actions for consumer engagement.
So when we looked across the Enhance HTA and the conversations for change work, the recommendations and suggestions could be distilled into five key focus areas. And these focus areas translate guiding principles into action, describing really the key areas where effort is needed to strengthen our consumer engagement in HTA.
So the first focus area, and again in no particular order, is raising awareness. This is about making it easier for consumers to understand HTA and know how and when they can get involved.
The next focus area, building capability, recognises that both consumers and all of us engaging with consumers need support, tools and resources to participate effectively. Next, we have elevating Engagement, which focuses on improving how and when consumers are involved, so that consumers have clear opportunities to contribute across the HTA process.
Strengthening partnerships, emphasising working together in a more coordinated and respectful way, particularly with those most impacted by the decisions.
and elevating, sorry, evaluating impact to ensure that we're learning from our experience, understanding what is working and where further improvements are needed. So each focus area is supported by a set of practical actions that together provide a clear and structured way to apply the principles across the HTA processes. And before I just move on to these practical actions, I just wanted to take you through a visual we've included in the framework to show consumer engagement in forming multiple stages of the health technology life cycle. Don't be concerned if you can't read the fine print here. This will be available to you when we have our feedback period. But I've included it today just so you can kind of get the gist of what you'll see across the top.
We have the main stages of the life cycle shown. So research and development, regulatory approval, funding assessment, and ongoing monitoring in practice. And for each stage, we've included key ways that consumers participate shown by sort of the talking mark icons. You know, I do want to emphasise this is simplified in that not every health technology research goes to full development, requires the same level of regulation, undergoes health technology assessment for funding or is recommended for funding. But what it illustrates is that consumer engagement can and is increasingly happening from research and development all the way through to use in practice. So while we have a spotlight on this diagram on consumer engagement and health technology assessment, for the framework. This stage builds from and it applies relevant earlier consumer engagement. And in a similar way, consumer engagement in the assessment and funding stage informs and is built upon in the ongoing monitoring stage. And like the other elements of the framework, this diagram is not intended to be prescriptive.
It's overarching and adaptable, covering current opportunities and practices, as well as leaving growing room to continue elevating engagement.
So, just moving back now to the focus areas to strengthen engagement.
So in the area of raising awareness, the actions include making better use of digital channels and platforms to share information, centralising resources in a single place that's easy to navigate so people can find what they need, consistently using plain language to explain each process, each technology and reasons for funding decisions.
and sharing opportunities to provide input widely and with clear purpose and timelines. In the Consumer Evidence and Engagement Unit, we're improving how consumers find and access information by updating our web pages so that they're easier to navigate and written in plain language. And these web pages will serve as a central location for various resources that we're developing.
In addition, we're planning social media activities to raise awareness that lived experience can impact HTA decisions. So we'll be reaching out to consumer organisations and asking that you share posts and related contents. And just as a very simple example, we've developed a digital toolkit with social media tiles to promote the dry framework feedback period within your networks. We've also made a number of recent changes to provide more information in plain language in the agendas and the outcomes of the Pharmaceutical Benefits Advisory Committee. But because the agendas can be large and complex, we're also making changes to distinguish where consumer input is most important for decision making and warrants your time and attention.
Rather than those items on the agenda that might be administrative in nature and don't impact on patient access.
Next, we have some actions for building capability, including providing support and guidance to strengthen understanding and meaningful engagement, tailoring resources and offering training to build knowledge and confidence, sharing practical examples of effective engagement, and encouraging continuous learning by reflecting on our activities. So in this focus area, the Consumer Evidence and Engagement Unit will develop accessible resources, including short explainers, infographics and videos to help consumers understand the process and where they can contribute. An example of a couple of resources we're developing that will build capability include a glossary for consumers and a plain language explainer of post-market reviews and drug utilisation reviews, including where there are opportunities for consumers to identify topics and participate.
The area of elevating Engagement focuses on improving how and when consumers are involved and the visibility of that engagement so that your perspectives are sought and also genuinely shape outcomes. The actions here include clearly explaining when and how to participate in HTA processes, the offering of different ways to participate based on needs and preferences, setting clear expectation about the purpose of the engagement from the outset and how consumer input will be used, and engaging early and at relevant stages across the process. In the Consumer Evidence Engagement Unit, as we go about updating our web pages and resources to be easier to navigate and written in plain language. We're also grabbing that opportunity to elevate consumer engagement by identifying and filling in information and accessibility gaps. We will strengthen guidance not only on what input is relevant to understand from consumers at each stage, but why that knowledge and experience is important. We anticipate that this will increase transparency of how the consumer voice is sought, heard, understood, and utilized, and that this will support a connected Feedback loop.
And strengthening partnerships is obviously about working together more effectively and ensuring the engagement is inclusive and respectful. So this is about actively including and supporting diverse participation from priority populations through tailored approaches, developing ongoing respectful relationships with consumer organisations and communities.
providing regular forums for dialogue and conversations, feedback and collaboration, and working together to develop those consumer engagement activities, processes and resources. An example here is that we'll be working with priority populations to develop tailored resources that meet their specific needs, and we'll involve internal and external stakeholders in this.
We have identified several existing working groups and advisory committees for priority populations where we can establish partnerships and leverage existing networks.
And then finally, evaluating impact is about understanding what's working and where we need to improve. The actions of this focus area involve tracking consumer engagement activities and use of resources, assessing how those consumer perspectives inform HTA decisions and discussions, explaining how consumer input was considered and inviting feedback from consumers on their engagement experience.
And importantly, making good use of that feedback and collaborating to continue strengthening our engagement approaches over time. In the Consumer Evidence and Engagement Unit, we're developing ways to capture both process and impact. For example, tracking when and how consumers are involved, how the input has influenced decisions or outcomes.
And this will include working with the Health Technology Assessment Consumer Consultative Committee to define and use clear metrics and indicators. And we've consistently heard the need for a more formal feedback loop regarding how consumer input was considered in HTA decisions. And we'll be reaching out to you to better understand your needs and preferences to support a transparent and repeatable approach.
And we're going to do this through community conversations and a survey, and we expect that we'll have this work underway in June. So I've been showing you all of the components bit by bit. You might be wondering how this is all going to fit together. So we've consolidated the framework elements into a three-page short document.
We had a little drum roll here, but I don't know that sound effects are working.
But this is what you'll see. So what we've got is quite a concise, easy to access document. Obviously, there's no rush to read the fine print now. You'll have time to take it in when we open the feedback on it. And we're also preparing an accessible plain text version of the framework so that everyone can participate.
So next steps, so next Tuesday, the 28th of April, a four-week feedback period will begin where everyone will be invited to share their views on the framework via a survey. We really would appreciate it if you can help us distribute the link to the feedback survey among your networks.
And the survey we will put on the consultation hub as many stakeholders are familiar with that platform already. And then once the feedback period finishes on the 26th of May, we'll provide a summary of the themes and the responses that we've received. We'll publish that so that everyone has visibility of that. And then we'll move to refine the framework and finalise it.
So thanks for listening. And I'm just going to pass to Jo now to share her thoughts about the framework and putting it into practice. Thank you.
Jo Watson
So thanks, Alicia. And I just want to acknowledge all the work that Alicia and the team have put into all of this to get to where we are. I think it's probably fair to say that it's consumed a lot of the activity of the unit for pretty much
most of this year and leading into the end of last year. And it's pretty comprehensive in terms of that overview that she's just given you, I think, in trying to articulate the thinking behind it. I'm just waiting for some slides, Claudia. They don't seem to be.
showing up. But what I thought I would try and do today is just on the follow of Alicia introduction to the framework itself is just try and have a think through of some of the discussions that we went through with the Consumer Conservative Committee or the Triple C, and also I think just some context as to why I think.
I want to think about this framework and how it's being introduced at this point in time as an opportunity. And I think it's probably an opportunity that we need to step back a little bit and think about in the context of where we've all come from and
how we are positioned today and what is, I think we'd all probably agree, is a very dynamic and a very, in some ways, stable environment, not just in terms of the HTA space, but the broader system and the broader context of global effects and activity as well. So look, I went back, as I often do, to the 2009 HTA review, a review that not everyone is familiar with, but a review that I think, was the beginning of, for many of us, of thinking about what this means, that bolded point about being consultative and reflective of Australian community values. In 2009, the then department, led by the Assistant Secretary at the time, put together a review on the principles behind the Australian Government HTA processes. And I've used this slide a lot over the years and I think it's almost a bit of a North Star for me in terms of what it is we're trying to do when we talk about this notion of an HTA system that really does want to give life and breadth to the notion of consumer engagement and what that means in terms of practical implementation. So in terms of, as Alicia said, you know, the work that went on from there, we've seen a lot of government reviews, through Senate inquiries, through House of Representatives standing committee work, through the work that was the development of a new edition of the National Medicines Policy, which many of you were involved with, not just the 2022 review, but also the original.
And of course, the work that has happened since the Consumer Evidence and Engagement Unit has been in place from 2019. And that's all fed into then what we saw with the 2024 work that came out of not just the HTA review, which got a lot of national attention across our sector in particular, but also in terms of the, what I thought was one of the most stunning pieces of work to come out of this area is the co-design work, which was a true collaboration and co-design facilitated and supported by the department and involving departmental consumer and industry collaborators. And I really think it delivered something that the Minister himself has acknowledged is almost the companion to the work of the review itself. And it's all by way of saying this is continuous work, right? It's work that is just going to be one of design and evolution. And it's going to, I think, test us all at times in terms of what we find ourselves in as a dynamic that never seems to just settle. There is always a constant set of interrogation and debate and change and at times conflict. But I think the continuous work does form an environment that makes us all incredibly accountable. And I welcome that. I think that's a good thing.
I think across a partnership or a sector, accountability isn't just about those with the biggest voices or those that are trying to bring something in a commercial arrangement to market, but I think it's about accountability as to how we all want to give some life to these actions and principles that we have fought for. So the Consumer Consultative Committee, for those of you who might not be that familiar with it, in the structure, it sits within the department. It's, as Alicia mentioned, made-up of the membership of those committees and places on the left hand side.
And over the years, that has been in place since 2017, and over the years, it's contributed and tried to influence a whole range of activities across those previous reviews and report considerations looked at the framework in its development as it was presented to us in February by the department and really gave ourselves, I think, pause to think about what are all the various expectations of that framework. What are the key points that we wanted to make sure we preserved and honoured that came out of so much previous consultation and surveying and advocacy and work. And finally, what was going to make it accessible so that it was something that was actually a useful resource and something that was going to be manageable across many forums and many audiences.
Our points of discussion included this notion of what it was that participating in HTA processes was really about in a meaningful way. What is it that we want to get out of this whole notion of consumer engagement? And indeed, what is it that we want to say about it beyond a committee process or a particular medicine or a particular advocacy point for a medical service? What is it that we want that really does give life to the notion of true partnership and ongoing collaboration? We've seen these themes now, I would argue probably more than two decades come through all the work that has been evolving and developing in that time. The notion of partnership is debated still today the notion of what is active participation and dialogue and indeed what is it that we want to see by way of system or process change that is meaningful and of value for that final purpose of delivering on behalf of patients. And improved health outcomes through the processes.
So the three-page blueprint as the resource is going to be your homework for the next few weeks as you consider it and think about the way you want to give us feedback on it. I'm not going to labour the point, I've tried to explain that it's presented in this particular format and in this particular way, because the unit has worked really diligently, I think, to reflect what the Triple C was saying about accessibility, about conciseness, and about not duplicating or reproducing a whole range of work that those original sources of information and consultation provide us already through those reference documents. You know, the National Medicines Policy, all the reports that have been shaped and led by consumers since that time, they are our bedrock and foundation and this blueprint does not need to continue to reproduce those. What it needs to do is become our useful tool. I think the features of it lend itself to that. So the Triple C were keen to say there needed to be simple but strong concepts with the clear purpose that was going to support this notion of collective action. Consistent elements through it in terms of how they can be integrated and adopted across the system and across a whole range of activities, not limited to just committees or particular committee work. And a flexibility for adapting as well as working in synergy, I might add, for those other policies and frameworks and strategies that are we all part of this ecosystem?
So I think apart from establishing that clear vision about what patient engagement in HTA should be, it's also about thinking on what it is that we want to say about offering the quality and value and meaningfulness of that engagement. So thinking about it through, as I've just said, a broader lens rather than just components and thinking about it across a whole of a sector and system. The Triple C spent quite a bit of time thinking about who is the framework actually talking to.
It's, I think, something that's going to be useful for thinking about it as a direction for practice, a direction for also thinking about who is responsible within all these areas of activity and decision making. And how is it that the framework can be usefully used to connect with the National Medicines Policy and those other priorities and those other documents of reference. It's A framework that I think can also map the value and execution of activities through those implementation objectives.
And that's going to become even more important overtime.
So direct influence and guidance, I think, is an opportunity here for using this. Patient Engagement is not completely well understood yet, as many of you will be able to attest to. It's viewed quite differently across a range of stakeholders and different
areas and organisations. So I think it becomes a useful tool in terms of that sort of educative opportunity as well as being able to use it to guide others. And I think how it can best influence across the sector reinforces what it is that we're trying to say about how consumer engagement is such a powerful way to be able to be utilised within decision making for broader health outcomes.
So I'm a bit cheeky here. Some of you have seen this slide before. We all get tired. There is definitely a high level of fatigue around reviews and roadmaps and implementation plans and the like. But I want to say that this framework is the beginning of something. It needs to be embraced as we go through the next period to finalise it and it needs to be something that we can then take with us and have as an addition to those other compelling documents.
It's going to be, I think, something incredibly important as we disrupt further, I think, in more conversations about actions and activities we're looking to get into. The investment in systemic change may not happen at the pace that many of you want. HTA policies and methods are not necessarily going to all be reshaped as quickly as people might want. But at the end of the day, a Consumer Engagement framework that underscores these really critical themes for patients and consumer organisations is how we continue to advocate for things that are meaningful for patients and consumers.
This is just a slide to remind us all that we have come from a darker and less active space. We are now, I think, at a real crossroads as to how we navigate forward. So think about the exciting things we can get to once this framework is delivered and we are then at the exciting opportunity of looking at deliverables and activities. I think the shared purpose goal is real. It's shared across the department, the committees, the broader sector, as well as across the community. I think the integration of patient inputs and evidence is going to be a really exciting time as that work gets delivered both through MRFF initiatives that many of you are involved with as well as internally with the department work. The Consumer Evidence and Engagement Unit is committed to a whole range of activities that we've been talking about for a long time.
I think the work that goes on as we continue to see improvements in that space is going to really give us a new level and a new way of working across the partnership. So final slide for me is to say please use this period for Feedback in a constructive way and in a spirit of where we want to get to, which is literally July to finalise it. Because once we've hit July and that is done, then we can get into the next lot of work and activities as to how best to use it. So, I'll leave it there, and thanks for listening.