Advancing patient voices in Health Technology Assessment (HTA)

On Advocates Day at the World Bladder Cancer Patient Forum 2025 in Brussels, participants joined a two-part session, “Advancing patient voices in Health Technology Assessment,” led by Dr Anke-Peggy Holtorf (HTAi Board Member). The morning presentation set the scene: HTA is a multidisciplinary process used to determine the value of health technologies (diagnostics, medicines, devices, procedures) to inform fair, efficient decisions in health systems. Dr Anke-Peggy Holtorf underlined the momentum created by the recent global push for social participation in health policy, noting that patient input is core—not a tick-box—to better, trusted decisions. She walked through the HTA pathway (from horizon scanning to appraisal) and showed where patient perspectives—on outcomes that matter, lived experience, care pathways, and cultural context, sharpen relevance and equity. She also highlighted practical enablers: clear objectives for involvement at each step, transparency from agencies, awareness of opportunities to contribute, and training and capacity building so advocates can participate confidently and effectively.

In the afternoon workshop, participants applied these ideas to real-world challenges in three breakout groups and reported back with concrete, actionable proposals:

Group 1: Building confidence and capacity for patient reps in HTA committees.

The group tackled the feeling of “guilt” some patient representatives experience when sitting on HTA committees. Their conclusion: shift the focus from guilt to preparedness and realistic responsibility. Solutions included structured training on the topic under review, coaching in presenting arguments, and peer-to-peer support with mentors who have previous HTA experience. They proposed plain-language summaries of technical documents, involvement of clinicians as explainers, and shared responsibility with the committee chair and agency to orient and support patient reps. A practical tool would be a national skills database of trained patient advocates, managed by the bladder cancer organisation, plus expectation-setting guidance (what HTA is/isn’t; what the patient role entails). They suggested WBCPC curate and signpost training offers and basic HTA explainers so members can quickly find what they need.

Group 2: Preparing for patient involvement where no formal HTA processes exist.

Here, the priority was capacity building so members in countries without formal patient involvement can still influence decisions. “What good looks like” is a formalised process for patient input nationally. The path: a coalition-developed toolkit (how to engage, where to find opportunities, how to submit evidence), links to structured learning (e.g., accredited courses and webinars), and a living map of country HTA set-ups (who decides, where to contribute, timelines). They recommended tapping the WBCPC Secretariat, member experts, scientific advisers, and carefully industry partners for resources and case examples, plus a fact sheet on all the ways patients can be involved and how to demonstrate impact.

Group 3: Training models, treatment access advocacy, and the coalition’s role.

This group compared training pathways (lived-experience reps vs organisational reps), citing Norway’s structured system with required coursework and compensation as a practical reference. They called for localised training attuned to national systems alongside coalition-level modules to cover common foundations. On access to innovative treatments, they suggested WBCPC run horizon scanning/pipeline updates and share successful submission examples across countries (e.g., how Canada and France structured evidence) to help advocates argue for access where patient populations are small and HTA thresholds are tight. Bottom line: the coalition adds value by equipping and connecting national advocates, ensuring trained, supported patient reps can contribute meaningfully and aren’t isolated.

Closing the session, Dr Anke-Peggy Holtorf stressed that effective patient involvement is iterative: start small, prioritise, build trust with agencies, evaluate what changed (not only the final decision, but the quality of deliberation), and scale what works together.