B: The need for standardised patient engagement in European HTAs
Across Europe, the landscape of patient involvement in the HTA processes is fragmented with significant variation in the level of patient involvement and an absence of common rules across countries.
Several countries have made significant progress in integrating patient perspectives into their decision-making frameworks. However, in other countries, patients are only involved in a limited number of HTA processes, their involvement is not meaningful, or they are not involved at all.
AThe National Institute for Health and Care Excellence (NICE) in the UK was the first HTA body to introduce standardised patient engagement. NICE has a well established process for involving patients in all stages of the HTA process, from scoping to appraisal. Other countries, such as Sweden, Norway, and Denmark, have also developed formal processes
for patient involvement in HTAs.
The discussion of patient involvement in HTAs in Europe would be incomplete without acknowledging the challenges and opportunities associated with it. While there is a growing recognition of the importance of patient involvement, several challenges hinder its effective implementation. However, there are also emerging opportunities that can drive improvements in patient involvement.
Challenges
There are several challenges to improving patient involvement in HTAs in Europe. These include:
Lack of a standardised approach
There is no standardised approach to patient involvement in HTAs across Europe. This makes it difficult for patients to participate effectively in the HTA process and for HTA bodies to ensure that patient perspectives are taken into account in decisionmaking. This represents a major barrier to equitable access to healthcare, as patients from different countries with the same disease may have different opportunities to be involved in the decision-making process.
Lack of transparency
In many countries, the process for involving patients in HTAs is not transparent. This can make it difficult for patients to understand how they can participate and how their input will be used.
Lack of resources
Many patient organisations do not have the resources to participate effectively in the HTA process. This can make it difficult for them to collect and analyse data, develop evidencebased positions, and engage with HTA bodies.
Lack of time
The HTA process is often very timeconsuming. This can make it difficult for patients to participate, especially if they are also dealing with a serious illness.
Opportunities
Despite the challenges, there are also several opportunities to improve patient involvement in HTAs in Europe. These include:
The increasing recognition of the importance of patient involvement
There is a growing recognition among policymakers, HTA bodies, and patient organisations of the importance of patient involvement in HTAs. This is creating momentum for change.
The development of new tools and resources
New tools and resources are being developed to support patient involvement in HTAs. These include guides, toolkits, and training programs.
The increasing use of patient-reported outcomes (PROs)
PROs are increasingly being used in HTAs to measure the impact of health technologies
on patients. This is giving patients a more direct voice in the HTA process.
