Patient involvement in Health Technology Assessment in Europe - An interim report on EPF survey with HTA Agencies

EPF is pleased to launch the report on EPF’s survey with HTA agencies on ‘Patient involvement in Health Technology Assessment in Europe’, which we had briefly presented in the previous Mailing issue.

Patient involvement in Health Technology Assessment (HTA) is still in its infancy even though several efforts have been initiated in the recent years. Many patients’ organisations called for support to be meaningfully involved in HTA processes in the EPF HTA Seminar in 2010. This is an interim report of the main results obtained from the survey with HTA agencies in Europe that EPF conducted between November 2010 and February 2011 as a part of its wider research to address some of the issues in patient involvement in HTA. 40 out of 50 HTA agencies completed the survey from as many as 23 European countries. The type and level of patient involvement is diverse in these countries, which is a reflection of their different rationale, motivation and approach.

Very few HTA agencies currently involve and integrate patients’ perspectives in their reports and conduct formal evaluation of the impact of patient involvement in HTA. 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 knowing the exact stage of HTA where patient engagement is needed or is most useful is still under debate. The last phases of HTA (external review, and diffusion and dissemination) accommodate some patient involvement but there is no or low involvement in the first few phases of HTA (identification, filtration, prioritization). The respondents have expressed that they would ideally like to improve patient involvement in the first phases of HTA.
The agencies mainly use easy-to-read HTA summaries to facilitate patient involvement, but they need to improve other means of facilitation such as education and training programmes and holding public conferences, seminars and workshops. They have provided some recommendations to patients’ organisations on how to get involved in HTA and they suggest that the latter would need to start by first understanding the principles of HTA and then being pro-active to identify ways and means to get involved. Above all patients’ organisations have to be vigilant and flexible to rising opportunities. They have to demand transparency in decision-making and a legal framework for patient involvement in HTA.

The perspective of patients’ organisations and decision-makers will be collected in the next phase of EPF research on patient involvement in HTA planned for the period April-July 2011.

The three pieces of work will complement each other and will be integrated into a final report.

The full report related to the HTA agencies’ survey is available here and for further information you can contact Liuska Sanna.