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The Citizen Participation Partnership Project

I Introduction
II Method
III Conceptual Framework for Decision Making in CHCs
IV Implementation Approach
V Key Learnings
VI Conclusion
VII Notes

-- by John Church, PhD; Douglas R. Wilson, MD; Ollie Triska, PhD; Kent Rondeau, PhD; Susan Wagner, MSc; Bob McKim, MSc; Ray LaFleur, MA; Karyn Simmons, MPH; Josh Marko, MPH

This article is part of a series inspired by CPHA's 2003 conference. For more information, read our introduction to the series in the OHPE News and Summary section of OHPE 344.0 (http://www.ohpe.ca/ebulletin/ViewAnnouncements.cfm?ISSUE_ID=344).

If you have a resource or point of view to add to this article, let us know by writing to editor@ohpe.ca. More information on our Letters to the Editor column can be found in our submission guidelines (http://www.ohpe.ca/ebulletin/submit.html).

I Introduction

Citizen participation has been viewed as an important part of a healthy democracy for over two thousand years. More recently, governments have taken a renewed interest in citizen participation as a way of involving citizens and communities in decisions about their health and the future of the health-care system. In fact, in health care, citizen participation is considered a key building block of primary care.

Community health centres (CHCs) are community-based health organizations that provide a range of primary health and social services through teams of health and social services professionals. CHCs are known for their emphasis on community care and citizen participation in decision making. This focus is important because two of the reasons government says it wants to reform the health care system are to
* place greater emphasis on health services with a community focus, and
* improve the role of the citizen in health-care decision making.

CHCs have been part of the Canadian health-care landscape for over 50 years. Currently, regional health authorities (RHAs) across Canada are developing CHCs to address these two objectives.

The Citizen Participation Partnership Project (CiPPP) looks at how people and communities work with CHCs to identify and respond to health issues. A total of 17 CHCs and 9 regional health authorities across 8 provinces are involved. The study includes CHCs that have been created as part of regional structures and others that were around before the regional health authorities. Funding for the three-year research project was received from the Social Sciences and Humanities Research Council, Alberta Heritage Foundation for Medical Research, and Health Canada.

II Method

The project collected data from approximately 1,200 participants (board members, volunteers, patients, administrators, health professionals, support staff, and community partner organizations) at the 17 CHCs through standardized questionnaires with a combination of Likert scale, binary, and open-ended questions. The segmentation of the sample was based on our initial conceptual assumption that CHC decision making involved three basic groups: citizens, administrators, and health providers. We further subdivided groups, based on the different roles we perceived they might play. For example, citizens were divided into board members, volunteers, and clients (group and walk-in). The intention was to be able to compare perspectives and look for convergence/divergence in the results. Questions asked related to perceptions of individual and community capacity, organizational capacity (structure, process, and culture), and outcomes (administrative and health).

A core of questions in the instruments was used for several of the target groups as a basis for analytical comparison. In addition to completing questionnaires, all participants, except walk-in patients and community partners, were asked to participate in follow-up group discussions or one-on-one interviews. Audiotapes from the discussions were transcribed and analyzed separately by two researchers. Once completed, the two researchers met to compare notes for common themes. Results were linked back to a pre-established conceptual framework.

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III Conceptual Framework for Decision Making in CHCs

CiPPP has developed a conceptual framework that maps the interaction between the stakeholders, their health issues of interest, the CHC structures and processes, internal and external influences, and the CHC's outputs (i.e., policies and services). (1)

The three stakeholder groups--citizens, providers and administrators--interact on health issues of mutual concern or interest. Each group's interest affects and is affected by the others.

The relationship of the stakeholder groups to the issues is also symbiotic. Issues may be brought to the attention of stakeholders by external events (e.g., increased levels of drug use or availability of funding for addiction programs) and may in turn be defined or refined by the stakeholders.

Organizational structures and processes will also affect how issues are framed by the three groups, and these structures and processes will in turn be affected by the interaction of the three groups.

Citizen participation in the decision-making process will be affected by a variety of internal and external factors. For example, level of education, employment status, attitude towards participation, role perspective, and local political and organizational culture may affect an individual's willingness or ability to participate.

The structures and processes of the organization will also play an important role in the willingness and ability of citizens to participate. For example, if the CHC has a mission statement and goals and objectives that place a high priority on citizen participation, then the opportunity to participate will be enhanced. In turn, such favourable structures should lead to organizational processes that facilitate meaningful citizen participation.

If structures and processes facilitate meaningful participation, then citizen inputs around specific issues should translate into appropriate policy/service outputs from the CHCs.

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IV Implementation Approach

While not explicitly employing a participatory action research approach, we involved decision-making partners (including some citizen representatives) and site organizational leaders in the development and implementation of the project:
* As part of the grant-application process, decision-making partners and site organizational leaders were approached about participation in and support of the application. In response, we received letters of support.
* At the beginning of the project, decision-making partners, site leaders and citizen representatives were brought together in Edmonton for a two-day interactive session. The meeting allowed us to determine the nature, scope, and feasibility of questions drawn from a pre-established question bank; facilitated a discussion of issues relating to timing and feasibility of data collection at individual sites; and provided decision makers, site representatives, and citizen representatives an opportunity to meet face-to-face.
* This initial interaction was followed by additional teleconferences and e-mail exchanges to finalize the research instruments.

The feedback received on the questions allowed us to significantly narrow the range and simplify the wording of individual items to be included in the questionnaires. Participants also indicated that adding an extra visit to each site prior to full data collection would allow board members, staff, volunteers, and patient groups to become oriented to the project and to make an informed choice about participation. The overall process of instrument development took approximately eight months.

Once the instrument design was finalized, we headed into the field to pilot the instruments and implementation protocol at 2 of the 16 sites (1 regional and 1 community based). This experience provided us with essential insights on the facilitators and on the challenges in collecting data in an active service-delivery environment. Site organizational leaders told us that if we wanted to get support and participation from board, staff/professionals, volunteers, and clients that a separate visit to meet with them and talk about the project would be essential. Also, we were told that flexibility in the implementation of the research protocol would be essential, since staff were overwhelmed with their regular responsibilities and community groups and volunteers only met at certain times. Making changes to regular routines would be extremely stressful for everyone.

Finally, we received valuable feedback on the instruments themselves. For example, based on feedback from staff/professionals, volunteers, and clients at the pilot sites, we made adjustments to the wording of questions and the number of instruments:
* The word "citizen" held various meanings for different stakeholder groups. Among volunteers and patients who had emigrated from countries with limited democracy, the word had negative connotations.
* We determined that support staff could provide a valuable perspective on citizen participation but might not be able to respond to the questions asked on the administrator's survey. Therefore, we designed a separate questionnaire for support staff that was implemented during the full roll out.

Once data analysis on the pilots was completed, we developed reports for the two pilot sites. We asked the sites to provide us with feedback on the format of the report and the usefulness of the information. Based on feedback we made adjustments to some of the messages in the reports and related documents to clarify the findings for other participants and the broader community. This process overlapped with the implementation of the full rollout to the remaining 14 sites, which occurred during an 8-month period (13 of 14 sites were visited in the first 4 months).

In analyzing the data from the pilots and full rollout, we grouped questions according to constructs developed within the initial conceptual framework. For individual site reports, findings were also reported according to the conceptual framework. Results of the qualitative data gathered from the group discussions were categorized according to the conceptual framework and emerging themes. A broader summative analysis is currently underway and will be completed in early spring 2004. (2)

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V Key Learnings

The project produced a number of key learnings about partnering with organizations in multi-site research projects and how citizen participation works in CHCs.

* Collaborative Research: To allow for participant buy-in and participant-sensitive research, developing and maintaining partnerships, as outlined in section IV, was a continuous and invaluable process throughout the project. The site organizational leaders, who were often senior staff, played an indispensable role in encouraging buy-in and coordinating the schedule for data collection. On the other side of the equation, the CiPPP research coordinator played a crucial role in ensuring that the overall process was smooth and that quality was maintained throughout.

* CHCs and Citizen Participation: Although the analysis is not yet complete, preliminary results suggest that CHCs provide opportunities for citizen participation in health decision making, facilitate individual empowerment, and are responsive to the health needs of their communities. Having said this, the relationship between community boards, staff, patients, and community partners does not seem to be direct. The major connection between the community and the organization appears to occur among staff, patients, and community partners at the program and service level. In general, volunteer activities tend to be clustered around individual programs/services with little cross-fertilization. Volunteers tend to have less of an understanding of the overall organization than of the program or service in which they were involved. Board members and many volunteers did not actually receive services from the CHC.

* CHC created by regional health authorities and independent CHCs may have more similarities than differences.

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VI Conclusion

The Citizen Participation Partnership Project has provided us with a rare window into how the capacity of individuals, communities, and primary health care organizations is harnessed and enhanced when collectively addressing health issues. The information gathered through the project speaks to a variety of audiences:
* For individual CHCs and their communities, site-specific reports offer an assessment of their current mutual capacity to respond to health needs.
* For regional decision makers, the overall findings suggest that the development of CHCs within health regions can incorporate many of the positive qualities of the CHC model.
* For provincial decision makers, the project re-affirms the need to give serious consideration to CHCs as a viable and desirable model within the context of primary health care reform.
* For health promoters, the results confirm the important role that CHCs can play in enhancing the capacity of individuals and communities.

For further information on CiPPP, please contact Dr. John Church at john.church@ualberta.ca or visit the project website at http://www.cippp.ualberta.ca.

VII Notes

(1) The CiPPP conceptual framework diagram will be available as part of audio/visual presentation on the Centre for Health Promotion Studies' website (http://www.chps.ualberta.ca). A notice will be included in the OHPE when the material is posted.

(2) Additional information from the summative analysis will be available in the presentation noted above The CiPPP project website is also slated for updates in February 2004.