4. Patients’ different roles in HTA


Patients’ different roles in HTA

Approaches to patient involvement vary according to the healthcare system and country. These approaches may be:

  • Bottom-up – in which the focus is on direct participatory involvement of patients, incl. family and caregivers.
  • Top-down – in which the public are merely represented or consulted, incl. public consultation when the HTA report or the political decision has been made.

Patient and public involvement in the HTA process and the act of balancing individual needs with those of the population is important. Measures should be taken in order to address inequalities between the strength of the voices of professional and industry interests and those of citizens and patients.

Simply advocating that a new technology is ‘needed’ once it is being assessed, is not enough to influence the decisions of publicly accountable decision-makers and the HTA bodies that support them. Rather, active patient participation providing evidence-based information in one or several of the sub-groups affiliated to the HTA body will ensure a consistent focus on the patient.

The role of patients may begin with making sure that an appropriate patient engagement HTA process is put in place at national or local level. This includes:

  • Verify that their local HTA body has a manual of guidance on methods and evaluation and if not, propose the implementation of a suitable approach. This could foster consistency in scientific analysis and use of transparent and up-to-date comparable approaches.
  • If a manual or methods guidance exists, check to see if methods of assessment of patient-reported outcome, experience, health related quality of life measures and other ways of incorporating the patient perspective also exist or ask for them to be included.
  • Ensure that patients have well defined roles in different aspects of the HTA process.
  • Help facilitate the involvement of patients in defining the HTA question(s).
  • Ensure that explicit and transparent processes are used for data collection and analysis.
  • Contribute to the evaluation of patient relevant data, interpretation and analysis.
  • Participate in committees making HTA recommendations.
  • Provide feedback during public consultations