EPF Research

EU Patient Involvement in Health Technology Assessment (HTA)

General information


Health Technology Assessment (HTA) is way of assessing the ways science & technology are used in healthcare and disease prevention. It covers medical, social, economic, and ethical issues.

It provides policy-makers with objective information, so they can formulate health policies that are safe, effective, patient-focused and cost-effective.

What is the initiative about?


Health Technology Assessment (HTA) is a multidisciplinary tool that ideally should involve patients’ perspectives; however, in reality there is still a long way to go in achieving meaningful patient involvement in HTA.

EPF came to this conclusion after a seminar on HTA in 20 May 2010 and realised that patient organisations clearly needed support to be meaningfully involved in HTA processes. As a follow up of the event recommendations, EPF started conducting primary research on patient involvement in HTA since November 2010.

The reports of the three main stages are currently available on the right hand menu.

EPF will integrate the results of all phases in a final comprehensive report.

Initiative’s objectives


The aim of EPF’s research is to understand the involvement of lay patients, informal carers and patient organisations in all the EU member states and to contribute this knowledge to inform HTA – research, policy, and practice. The outcome of this research work will be a good practice toolkit to be shared with HTA agencies, patient organisations and decision making bodies in the EU.

How was the research conducted?


The research involved consultation with three main stakeholders:

  • HTA agencies (1st phase): from the first phase of the research, it emerged that very few HTA agencies currently involve and integrate patients’ perspectives in their work. Apart from financial resource constraints, the main challenges are perceived to be the lack of capacity, time and good methodologies to involve patients. Above all, the question of the exact stage of HTA where patient engagement is needed or is most useful is still being debated but he respondents have said that ideally they would like to improve patient involvement in the first phases of HTA. 
  • HTA appraisal committees and decision makers (2nd phase): the research made on decision makers clearly illustrates the need for EPF to continue advocating for patient involvement in HTA. Despite the fact that involving patients is in general considered beneficial, the bodies or institutions in charge of decision making on health technologies admit not to always do it. And often when there is some form of patient involvement this is not done in a systematic, comprehensive and meaningful way.
  • Patient organisations (3rd phase): the third phase confirmed that patient organisations are poorly or not involved in both aspects of HTA and decision-making. They are not enough involved in stages like scoping and prioritisation where decisions are made about which treatments to assess and what aspects. Without this early involvement there is a serious risk that treatments made available do not respond to patients’ needs and that crucial needs remain unmet.

Through surveys and discussions, EPF collected their views, needs, ideas and expectations in shaping the role and scope of patient involvement in HTA processes.
 
For more information, please contact Liuska Sanna, EPF programme manager.