An EFNA-commissioned mapping exercise of neurology patient engagement in Health Technology Assessment, shows uncertainty in how the provision of a patient perspective impacts final decisions.

Covering six countries – France, the UK, Spain, Sweden, Germany and Poland – the arising report suggests that although there are more and more ways for a patient perspective to be provided, it is unclear how this influences the result.

EFNA commissioned Pharmerit International to carry out Phase 1 of this project, which was based on desk research aiming to elucidate the systems and practices that are currently in place to support patient engagement in HTA processes.

According to the report: The lack of voting rights, funding to support advocacy group efforts and transparency regarding the content of discussions that take place at HTA meetings make it difficult for patients to influence HTA decisions in many countries.

“The results are not surprising,” said Donna Walsh, EFNA Executive Director, “We have been running training workshops on HTA for many years, and we hear from participants that whilst they are now upskilled and ready to be more involved – they feel that Patient Relevant Outcomes Measures and their own personal testimony is not adequately integrated into the decision-making process.”

“However, this is particularly important in the field of neurology where patients are living with chronic, often life-long, conditions where they are more concerned with improvements in overall functionality than in, the more easily measured, improvements in individual symptoms.”

The report concludes that further research involving patients and other stakeholders is needed to gain a better understanding of patient groups or patients with neurological disorders can improve the HTA decision-making process.

EFNA will now commission Phase 2 of the project which will include face-2-face interviews with patient advocates and payers in the six countries.

“We hope that these interviews with provide greater context, clarity and insight to the Phase 1 report,” says Donna, “And we plan to use the results to advocate for more meaningful involvement and to develop tools to communicate the important specifics of neurological disorders which can be impactful and beneficial to patients.”

You can read the full report of Phase 1 here.

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With thanks to Merck, Novartis and Roche