Why Patients are Prepared to Fight for a Voice in the Value Debate

That much became clear during a Related Meeting of the EULAR Congress 2021 this month, where the European Alliance for Patient Access assembled RMD patient associations from across Europe. The groups expressed their commitment to having their voices heard during health technology assessments, where national decision-makers gauge a new medication’s value.

The conversation stemmed from a December 2020 policy report, Patient Engagement in Health Technology Assessment, which revealed that patients sometimes lack a meaningful role in these processes. 

With views presented by patient advocates from Italy and the UK, as well as a pan-European perspective from EUnetHTA, the dialogue made one point clear. Patient organisations have encountered a number of barriers to getting their voice heard during health technology assessments.

Barriers to Patient Engagement with HTA  

Barriers to effective patient organisation participation included:

• Recruitment. Patient organisations are being asked to recruit patients. However, organisations have scarce resources – and capacity has been restricted further during the COVID-19 pandemic.
• Process complexity. Assessments are complicated, with many different formal stages in the evaluation process that are often new to patients and patient organisations. Patients are often unclear about what is expected of them.
• Lack of support. Usually, HTA entities adopt a ‘Build it and they will come’ approach, with little help to guide patient groups through the process.
• Lack of resources. Participating in a health technology assessment can require time and staff manpower. Financial compensation, however, is non-existent or inadequate, failing to reflect the expertise and time given by patient organisations. 

Patient advocacy groups are, however, intent on improving the situation. And they have ideas on how these issues could and should be addressed.

Looking for Solutions

Potential solutions include:

• Clearer communication. HTA organisations can improve communication about what is wanted and why patients are involved in the HTA. They can, in plain language, describe the process for input.
• Greater awareness. Better and wider dissemination outlets could promote more awareness of how to get involved. 
• Training. By providing training for patient groups, HTA organisations could empower them to become active partners in the HTA process. Patient groups also need help in creating capacity within their organisations to train patient representatives themselves to take part in assessments.
• Reasonable timelines. Building in sufficient lead time would support patient representative recruitment and engagement.
• Support. Adequate compensation would help account for the significant time required for patient involvement

The conversation also touched on how to make patients and patient organisations’ contributions more meaningful. This could involve including patients on committees within the health technology assessment organisations or granting them voting rights.  Patient groups could also benefit from a statement, at the outset, of how health technology assessment organisations plan to use patient input – as well as a report afterward accounting for how they followed through.

Patient organisations are playing their part in seeking to improve health technology assessments. Now it is time for those seeking this expertise to make input more feasible – and more meaningful.