Supporting the patient voice in HTA launching a standard template for information Kate Morgan, Head of Policy and Access Myeloma Patients Europe
and Martin Coombes, Director, Policy Advocacy and Government Affairs Bristol Myers Squibb
Patient involvement in HTA Health technology assessment (HTA) is a critical part of securing access to new treatments for patients in many countries. It is an evidence-based process that is used by healthcare systems to determine the value of a new medical treatment or device. It is increasingly recognised that HTA bodies should seek direct input from patients, their families and carers, although this does not always happen consistently. The views and experiences of patients and carers of what it is like to live with a condition, and the potential impact of a new treatment, is unique and provides a realworld perspective otherwise missing from HTA assessment. Engaging with patients, carers and patient advocacy organisations (“patient experts”) to seek these insights should be a core part of an effective HTA process and there are many best practice examples of how this should be done effectively. For example, HTA bodies like the National Institute for Health and Care Excellence (NICE) and the Scottish Medicines Consortium (SMC) in the UK provide systematic written and verbal opportunities for patient experts to provide evidence. To be involved in the HTA process, patient experts need clear and accessible information on the treatment and decisionmaking problem they are being asked to comment on. For example, it is useful to receive lay language information on the relevant clinical trial, treatment side-effects and how the treatment will be used in clinical practice. However, this information is not often available or accessible to patient experts. In addition, where information 14
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HTAi PCIG SIP working group co-chair Kate Morgan, Head of Policy and Access, Myeloma Patients Europe
HTAi PCIG SIP working group co-chair Martin Coombes, Director, Policy Advocacy and Government Affairs, Bristol Myers Squibb
is provided by the HTA body it is often complex and technical in nature. Patient experts often have varying knowledge and experience of HTA, and the medical information being assessed. Taken all together, these factors mean participation is often difficult, which can impact on patient expert HTA submissions.
assessments, the PCIG developed a tool called the International Summary of Information for Patient Groups (SIP) template, alongside detailed guidance to support implementation by HTA bodies and the pharmaceutical industry. The idea is that this can be adapted and used by any HTA body in the world to support patient expert involvement.
HTAi PCIG Health Technology Assessment International (HTAi) is a global professional society for stakeholders who produce, use, or are involved in HTA. HTAi have an Interest Group for Patient and Citizen Involvement (PCIG) who share best practice, run projects, and develop tools that encourage robust engagement of patient experts in HTA. To improve the quality of information provision to patient experts during
What is the International SIP? The International SIP is a plain language summary of an industry submission on a treatment that can be used by patient experts to inform their contribution to the HTA process. The submitting manufacturer completes the template, as part of their normal HTA submission, which is then reviewed by the HTA body before being shared with patient groups.
