AdvanceGender
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Participation of civil society stakeholders in health reporting
Background

An intersectional perspective on sex/gender groups helps health reporters to focus more on social groups in specific situations. These can be, for example, women with a migration background, men with disabilities, unemployed women or other groups in life circumstances that might have a negative impact on their health. An important goal of intersectionality is to promote the empowerment of social groups through their participation in research or policy-making. For health reporting, this can mean that underrepresented perspectives are made visible and the communities in question are included in the decision-making processes. This way, relevant topics can be identified more easily, existing data can be better classified and interpreted, and the results can be communicated in a non-discriminatory way.

Many social groups are self-organised, e.g. in counselling centres, self-help groups, clubs, or social associations. The participation of such organised civil society stakeholders has a comparatively low-threshold for increasing participation as these institutions can bring the knowledge and interests of the affected groups into the processes of research, health reporting and policy-making. The following challenges for the participation of civil society stakeholders and suggestions for PHMR practice have been identified by the project team.

Challenges and suggestions

I. Considering the heterogeneity of a social group

  1. The selection of the specific stakeholders should be justified in terms of content, the topics of the planned report and its function for the social group in question.
  2. When recruiting civil society stakeholders, care should be exercised to sufficiently consider the heterogeneity of the respective social groups and their specific circumstances.

II. Shaping specific forms of participation

  1. Decision-making processes and structures of PHMR and specific health reports should be made transparent for the stakeholders involved.
  2. PHMR should strive to make visible the health needs of the specific groups in question and to set the reduction of health inequities as a practical goal.
  3. The resources expended by civil society stakeholders should be acknowledged (e.g. through co-authorship, or data and information sharing).
  4. The degree of participation by civil society stakeholders (from consultation to community-driven reporting) should be discussed in advance and decided on based on transparent criteria.
  5. The extent of participation by civil society stakeholders (selective participation vs. participation throughout the entire reporting process) should be discussed jointly and in advance, and decided on based on transparent criteria.

III. Taking scarce resources (funding, time, staff) into account

  1. Specific formats for participation should be adapted to participants’ available resources and the particular topic being researched (e.g. temporally flexible formats); formats preserving stakeholders’ resources should be should be offered and prioritised (e.g. digital formats, frequenting stakeholders in their preferred locations).
  2. Financial resources should be budgeted for the participation of civil society stakeholders (e.g. remuneration, travel allowances, accommodation costs).
  3. Existing structures, such as health conferences or expert committees, should be used.
Conclusions

The challenges and suggestions for the participation of civil society stakeholders formulated here are based on leading edge scientific discussions on sex/gender-sensitive and intersectional health research and reporting, on original research and desk reviews. In addition, the expertise of scientists, health reporters and civil society representatives were included in a structured way. A Delphi survey showed a high level of agreement with the recommendations developed by the project team. For the area "participation of civil society stakeholders in health reporting", civil society stakeholders made important suggestions that should be taken into account during implementation.

First, participation is always a complex process. It offers the opportunity to jointly develop topics together with the social groups that are to be reported on. Time and financial resources must always be factored in to ensure success. Some experts noted that given the limited resources of PHMR, this may not always be feasible to the extent suggested in our recommendations.

Second, increasing participation is not equally relevant for all areas of PHMR. A typical area of application concerns targeted reports on specific social groups; participation may be less appropriate for standard reports focusing on the general population.

Third, the role of civil society stakeholders was critically reflected upon. It was pointed out that they often do not fully represent the heterogeneity of social groups and that the exclusion of other perspectives is unavoidable. This limitation should, if possible, be made visible.

Finally, quite a few commentators had reservations about PHMR actively advocating on behalf of disadvantaged groups. While health inequities need to be highlighted, PHMR should nonetheless try to remain politically neutral.

This document was retrieved from the AdvanceGender website (www.advancegender.info).  

Authors:

Kathleen Pöge, Alexander Rommel, Sarah Strasser, Anke-Christine Saß, Franziska Prütz, Anne Starker (RKI) on behalf of the joint project AdvanceGender

Suggested citation: Pöge K, Rommel A, Strasser S, Saß AC, Prütz F, Starker A. Participation of civil society stakeholders in health reporting. In: AdvanceGender Study Group (ed.). Suggestions for sex/gender-sensitive and intersectionality-informed research and health reporting; 2022. (www.advancegender.info)

Corresponding authors: Kathleen Pöge (PoegeK@rki.de), Alexander Rommel (RommelR@rki.de) 

Version: 1.0 (Date: 24.01.2022)