2. Patient input – ’advocacy’ versus provision of ’evidence’

Patient input – ’advocacy’ versus provision of ’evidence’

HTA processes are intended to be helpful for decision-making – they should provide appropriate data and analysis coupled with a fair and accountable process to produce recommendations on which authorities can base their decisions (e.g., making a new health technology available to the patients who need it and how).

In this process, patient inputs are crucial to make sure that the value and importance of the new technology for their well-being is taken into consideration. This is important as the decision that comes at the end of the HTA process can play a major role in patients' health. To ensure that their priorities are taken into account, patients should have the opportunity to provide input to the HTA process.

Patient advocacy clearly can provide insights on patients' lives and (unmet) needs by explaining to decision makers how important a decision is and why it is so important. Decision-makers need this information to justify their decisions based on all available information using a defensible and transparent process which includes those most affected by the decision taken.

However, patients should also have an active role in the HTA body from shaping the HTA questions, providing relevant patient outcome and experience data, to weighing the evidence in the synthesis of available data in order for the HTA body to come to a recommendation.

A starting point for any patient or patient group is to assess whether their local HTA process includes patients, at which stages and in which roles. As the structure and procedures of HTA bodies vary between countries and at local levels, patients are advised to examine the structure and processes of their national or local HTA bodies to make sure that their contributions match the HTA body's remit.

For HTA bodies that do not include patients as active contributors, patients can start examining whether data about patient outcomes and preferences have been included and how data      was assessed and weighed in the overall synthesis to ensure a fair and relevant representation. Patient groups may also consider how they can best develop or provide population-based research to these HTA processes. This approach requires early collaboration with the responsible HTA body.

Many HTA processes fall short of these important practices, considered ‘key’ principles. For example, many HTA committees lack patient involvement, i.e., someone who understands the process and can speak on behalf of patients during the defining, assessment and appraisal phases.