We asked, you said, we did

We asked consumers and consumer organisations what feedback they would find useful after providing consumer input into a health technology assessment (HTA).

We wanted to understand:

• what people would like feedback on
• why feedback is important
• when feedback would be most useful
• how people would like to receive feedback
• how existing information and feedback could be improved.

We heard from consumers through an online survey and 3 virtual community conversations. The survey received 5 responses, and 23 consumer organisation representatives took part in the community conversations.

People told us that a good feedback loop should be an ongoing, two-way process. Consumers want to know that their input was received and considered, understand how it contributed to the HTA process, and know what happens next.

We heard that feedback would be most useful when it:

• gives clear information upfront about what consumer input is most useful
• explains in plain language how consumer input was considered
• provides feedback on what information was particularly helpful or where further information may be useful
• keeps consumers informed at important points throughout the HTA process
• provides opportunities to ask questions or clarify information when needed
• explains the outcome, next steps and expected timelines following a committee meeting.

Improving the feedback loop may involve different people and organisations at different stages of the HTA process. This could include the department, HTA committees, companies or sponsors, consumers and consumer organisations. Some improvements may be made by one group, while others may need people to work together.

People also told us that feedback should be proportionate. Routine feedback could be brief and consistent, while more detailed information or discussion may be helpful for negative, deferred, complex or high-impact outcomes.

We also heard that there is already useful information and support available. Published committee outcomes, Public Summary Documents, email updates, the Medicines Status Website, plain-language information and direct contact with trusted people were all valued.

However, not everyone knows about or makes use of these existing opportunities. People wanted information to be easier to find and understand, and feedback to be provided more consistently rather than depending on experience or established relationships.

We will use what we heard to inform work to improve feedback for consumers who contribute to HTA.

This includes considering how we can:

• build on existing HTA information and feedback processes
• make feedback more consistent, timely and easy to understand
• help consumers better understand and use the information and engagement opportunities already available
• improve information about what happens after consumer input is provided
• identify opportunities for clearer communication and coordination across the HTA process
• consider where improvements can be made by individual stakeholders and where working together may be more effective.

The findings will help guide future work to strengthen the feedback loop for consumer input into HTA.

See the report here: Feedback on consumer input - Office of Health Technology - Citizen Space

We published the draft framework for consumer engagement in Health Technology Assessment and asked you to tell us what you thought. We wanted to understand what you found helpful, what could be clearer, what was missing, and what would make the framework more useful in practice.

We received 80 responses.

Overall, people supported the framework’s aim to strengthen consumer engagement across health technology assessment (HTA). Many welcomed it as a way to build on existing processes and support more consistent, meaningful and transparent engagement.

The framework brings together key elements needed to support good consumer engagement including:

• recognising lived experience as integral to HTA and decision-making
• involving consumers earlier in the HTA process
• communicating more clearly and using plain language
• supporting inclusive participation
• giving consumers better feedback on how their input was used and considered.

The framework could be improved by:

• explaining the roles and responsibilities of different stakeholders more clearly
• including practical examples of good consumer engagement
• being more transparent about how consumer input influences HTA decisions
• ensuring consumer engagement is supported with appropriate time and resources
• making opportunities for consumer participation in HTA processes more accessible and inclusive
• using tailored engagement approaches so people from diverse backgrounds and communities, and underrepresented groups can take part in ways that are meaningful, culturally safe and supported.

We also heard that it will be important to measure the impact of consumer engagement over time, including clear measures of success, and regularly reporting on how engagement influences HTA decisions, improves processes and affects consumers who take part.

Many people also wanted clearer information about how the framework will be applied in practice, who will be responsible for taking action, and what tools and resources will be available to help people use it.

We are carefully considering the feedback received.

We will use the feedback to improve the final framework before it is published.

The feedback will also guide future work to strengthen consumer engagement in HTA. This includes developing practical resources to support the use of the framework.