Key takeaways

  • Including the patient perspective in HTA has a number of potential benefits.
  • First, incorporating perspectives and forms of evidence that may not have been considered from a narrower health system perspective can improve the quantity and quality of evidence, thereby improving HTA decisions.
  • Second, opening up the 'black box' of HTA deliberations to patients can reassure patients and the wider public that decisions are made on bases that patients can trust, even if they may not agree with those decisions. This promotes the legitimacy, credibility and transparency of decisions, improving the HTA process.
  • Third, explicitly accounting for patient values in HTA decision-making can signal innovators regarding what health systems value and are willing to pay for. This can guide industry research and development (R&D) towards the interventions, as well as the measurement of outcomes and experiences, that society and health systems value most highly. This improves the efficiency of R&D, the value of technologies and processes available to healthcare systems, and ultimately, the well-being of society.

Broadly speaking, we see three themes around which patient evidence and values can bring valuable insights to the HTA decision problem: 1) measuring and contextualising clinical outcomes; 2) understanding the value of improvements in outcomes or processes; and 3) demonstrating novel and societal value elements.

Within each of these themes, the most appropriate methods for incorporating the patient voice will depend on the nature of the decision problem. We suggest a number of complementary approaches, but ultimately, consideration of the patient perspective will rely most of all on the commitment of developers, regulators and assessors than the specific methods used to collect this information. As such, we make the following recommendations for improving consideration of the patient perspective:

  1. Developers, regulators and assessors should engage with patients early and throughout the process of drug development and evidence generation, including around defining the key trial outcomes and measures;
  2. Developers should collect and present patient evidence that complements clinical and economic evidence;
  3. HTA bodies should commit to considering patient evidence on an equal basis alongside clinical and economic evidence, including with explicit guidance and, potentially, by adapting their evidence paradigm to facilitate this consideration; and
  4. HTA bodies should give patients a direct voice in HTA recommendations

The patient voice matters in HTA decision-making because it ensures that healthcare assessments and decisions are aligned with patient-centred principles, reflect real-world experiences, and consider the values and preferences of the individuals who are most affected by those decisions. It ultimately leads to more informed, ethical, and patient-centric healthcare choices and should therefore play a pivotal role within HTA processes.

 

This Whitepaper, ‘Incorporating the Patient Voice in Health Technology Assessment’ was commissioned and funded by Daiichi-Sankyo. We thank the reviewers who provided feedback on the report.

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