Patient and citizen participation at the organizational level in health technology assessment: an exploratory study in five jurisdictions.

OBJECTIVE: While patient participation in individual health technology assessments (HTAs) has been frequently described in the literature, patient and citizen participation at the organizational level is less described and may be less understood and practiced in HTA bodies. We aimed to better understand its use by describing current practice. METHOD: To elicit descriptive case studies and insights we conducted semi-structured interviews and open-ended questionnaires with HTA body staff and patients and citizens participating at the organizational level in Belgium, France, Quebec, Scotland, and Wales. RESULTS: We identified examples of organizational participation in managerial aspects: governance, defining patient involvement processes, evaluation processes and methods, and capacity building. Mechanisms included consultation, collaboration, and membership of standing (permanent) groups. These were sometimes combined. Participants were usually from umbrella patient organizations and patient associations, as well as individual patients and citizens. DISCUSSION: Although the concept, participation at the organizational level, is not well-established, we observed a trend toward growth in each jurisdiction. Some goals were shared for this participation, but HTA bodies focused more on instrumental goals, especially improving participation in HTAs, while patients and citizens were more likely to offer democratic and developmental goals beyond improving participation processes. CONCLUSION: Our findings provide rationales for organizational-level participation from the perspectives of HTA bodies and patients. The case studies provide insights into how to involve participants and who may be seen as legitimate participants. These findings may be useful to HTA bodies, the patient sector, and communities when devising an organizational-level participation framework.

How to strengthen the presence of patients in health technology assessments conducted by the health authorities.

The constant development of health technologies, combined with the increase in the cost of treatment, means that States must continually make choices about the introduction of new technologies into their healthcare system and how they are to be funded. In France, the systematic participation of patients in these processes is one of the targets to be met in terms of healthcare democracy. Although, on an international level, patient involvement in these assessments is constantly growing, it is difficult to define due to the presence of unstabilised elements in terms of both terminology and assessment methods. As a result, patient and public involvement in health technology assessments varies considerably from one country to the next, from one field to the next and even from one type of technology to the next. Several types of involvement exist, ranging from studies conducted to collect patient "insight" (experience, perception, needs, preferences, attitudes to treatment and health, etc.) to processes aimed at including patients in assessments (as individuals, as representatives of associations, etc.). Given the scope and complexity of the subject, and the difficulty involved in understanding all the different aspects of health technologies and innovations, the members of the Round Table chose to concentrate on health technology assessments (medicinal products and medical devices) to develop national recommendations on all possible types of patient involvement in the health technology assessment processes conducted by the health authorities in France.

[Interactions between the pharmaceutical industry and nurses]. / Interactions entre l'industrie pharmaceutique et les infirmières.

The relations between healthcare professionals and pharmaceutical laboratories can influence treatment choices. Increasingly, nurses are a target for a visit from a medical representative. The French National Authority for Health supports professionals in their reception of medical information.

[Certification of health-related websites in France]. / Certification des sites dédiés à la santé en France.

The 2004 statute that created the French National Authority for Health (HAS, Haute Autorité de Santé) required it to establish a procedure for the certification of health-related web sites. The HAS established a procedure based on the HONcode certification scheme set up by the Health On the Net Foundation, with which HAS has a partnership agreement. The HONcode includes eight principles that govern the quality of online heath information and its presentation (quality of the production process). The collaboration between HAS and HON has already led to improvements in a large number of web sites in France and to their certification. The main advantages of certification for site publishers are better site quality and enhanced credibility rather than a larger audience. Quality certification has little impact on the choice of site by Internet users as they tend to use search engines to find health-related information. Future development of the procedure should work to increase the value of certification both by improving the quality of sites and in signaling quality to Internet users.