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You know Realise Advocacy as one of our rare disease collaborators, but now it’s time that you learnt more about the company’s team, mission and work.

Realise Advocacy has been kind enough to write an introductory blog for us, so you can begin to get to know the company and team better. Read what Lindsay and Josie have to say below and meet them at our upcoming webinar or by working with them to prepare for HTA and access!

Ahead of the much anticipated second consultation on The National Institute for Health and Clinical Excellence (NICE) health technology methods and processes, we have been reflecting on the role of patients in Health Technology Assessment (HTA) and how they are supported by NICE and others to fully engage in what can sometimes be highly technical processes.

We have learned a great deal through direct experience of supporting small patient groups to get involved in HTA processes. Lindsay still remembers her first experiences of working with incredible patients on HTA and just how steep a learning curve she faced. The challenges that patient advocates face are enormous and there are so many critical things that she wishes she had known back then.

Patient advocates have a deep understanding based, often, on the experience of living with a rare condition. Their expertise can be invaluable to the Health Technology Assessment process and decision-makers on which new treatments should be made available to NHS patients. Patients can provide powerful evidence about a condition and its impact on patients and families.

Whilst we are delighted to increasingly hear that HTA bodies (such as NICE and the Scottish Medicines Consortium (SMC)), industry and others describe patient input as important for Health Technology Assessment, we know that too many patient organisations continue to feel under-supported and ill-prepared to engage effectively in HTA and access processes. This seems particularly true in rare diseases, when small, dedicated patient organisations have to add HTA engagement to their already overwhelming list of priorities. Yet, the risk of not engaging is high, with a real risk that a new treatment may not be recommended for patients.

There are many small patient groups working hard to improve the lives of those living with rare conditions. Often, they have been set up by parents or patients who are living or caring for someone with the disorder. They have limited time, resources, money and technical expertise to be able to get involved confidently in this process. We hear again and again from patient advocates struggling to find the time and resources to invest in preparing for HTA and access.

In recent years, NICE has introduced workshops to help patient groups navigate their processes. There are also widely available webinars covering health economics. But these events can only go so far.

Too often both the HTA processes and the training available expect patient organisations to engage with NICE, SMC and others on their terms. It is rare that pharma companies, NICE or NHS England are able to understand the unique challenges faced by individual patient organisations and provide them with the tailored support needed to help them harness the power of their knowledge and expertise. By doing so, patient groups could translate their knowledge and expertise into the evidence-based advocacy that can be instrumental in decision-making.

This is why we have launched Realise Advocacy – to bring together experience from different sides of the decision-making process and help support patient advocates as they prepare for HTA and access.

We are delighted to be running a pilot programme in partnership with Findacure to better understand your needs as patient advocates. We will work with you in small groups and in 1:1 coaching sessions to develop realistic action plans that will enable you to:

  • Maximise your impact in HTA
  • Identify your strengths and challenges
  • Identify the resources needed to support you translate your expertise and lived experience into evidence which can have a real impact on HTA and access!

To find out more about our pilot programme and our work, please visit our website here.

Don’t forget!

We are delighted to announce our exciting partnership between Findacure and Realise Advocacy!

Our aim is to provide practical support to patient groups so that they can be better prepared to maximise their impact in HTA through evidence-based advocacy.

We are hosting our Navigating HTA webinar on 8th September and would love to invite you to attend. This webinar will:

• Provide attendees with a basic understanding of the HTA process

• Highlight real-world examples of patient groups navigating NICE and their unique learnings

• Give insight into the reality of patient group involvement in HTA, which will provide attendees with an idea of how to best prepare for the process

• Highlight what support is available and how to apply for Realise Advocacy’s support

There is also an opportunity for a limited number of patient groups to access free support through Realise Advoacy’s core modules.

Each module includes 8 hours of support where you can access useful checklists, practical action plans, group workshops and one-to-one mentoring, helping you to prepare for HTA.

Applications for our core modules close on the 1st of September, however, we will continue to accept applications, as we plan to run additional core modules in the future. If this is something that you are interested in, please complete the short application form on our website here.

Making a difference: helping patients maximise their impact on access decisions

by Guest Contributer time to read: 6 min