Background: French National Authority for Health (HAS) strategic framework planned to develop a more patient-centred approach. In 2016, a survey of HAS scientific project managers (n = 147) showed that they need to clarify what they can expect from patients or users in a specific situation (scope, development, appraisal), in order to specify more precisely their demands.
Objectives: To support project managers for more patient involvement in HTA or guideline development and healthcare organisations accreditation procedures.
Methods: A 1-year internal project was set up to share knowledge and experiences on patient involvement at the HAS level. A working group (n = 18) was composed with one of the project managers from each scientific department, documentation service and mission for relationships with patient associations. From 2016 survey results, 3 goals were determined by the group: to study the opportunity of an intranet platform on patient involvement, to write a lexicon common to all activities at HAS, to identify and shortly describe the benefits and drawbacks of all methods available to engage patients in HAS productions. 2-3 people subgroups took charge of a specific task and a 2-hour meeting every 2 months was planned to share intersession work progress and appraise the documents.
- An intranet platform for exchange and pooling resources, skills and tools on patient involvement is set up.
- 10 short information cards present patient involvement methods, from information gathering to full participation such as written contribution, users test, focus groups, involvement in working group or appraisal committees, citizens' jury... Each one specifies objectives, target audience, benefits and drawbacks, description of the method, special attention points and success factors, examples driven from previous productions at HAS with resource colleague’s name to get more detailed information if necessary and links towards bibliography resources.
- Lexicon is in progress and helps to clarify our view of patient/user partnership.
Conclusions: This transversal working group is a powerful way to spread a culture of patient involvement.