Citizen-Patient-Community Participation in Health Care Planning, Decision-Making, and Delivery through Rural Health Councils

Academic Position Statement

BACKGROUND 

The importance of involving patients in health care activities is widely recognized and prioritized through British Columbia’s Patient-Centred Care Framework. This includes facilitating patient involvement in quality improvement and health care redesign.  

The disbandment of the hospital boards in the 2000s alongside further health care restructuring that resulted in the current Regional Health Authorities, the Provincial Health Services Authority and what became the First Nations Health Authority, was met with the promise that the new structure would ensure local CPC engagement and involvement. This was rearticulated in the development of the Primary Care Network charter (2008).  

Within this context but with a particular focus on community input into long term are, the COVID-19 pandemic has highlighted the urgent need to develop, resource and implement Regional Family Councils for Long Term Care.  

PROBLEM STATEMENT 

There is a need for a robust infrastructure to hear and to integrate citizen-patient-community voices, and to support CPC participation in health care planning, decision-making, and delivery activities in British Columbia. CPC inclusion must be a part of the larger health care decision-making framework.  

KEY POINTS FROM EVIDENCE 

Citizen-patient-community participation in health care activities is rooted in an appreciation of the experience and wisdom of lay individuals, which can be harnessed to increase the local relevance of health care planning and delivery activities. There is evidence to suggest that CPC participation creates self-determining, empowered communities, who then contribute to the provision of locally responsive health care leading to improved health outcomes (A. Kenny N. H.-S., 2017).  

The following are important considerations for well-functioning and successful rural health councils: 

Clarify objectives. It is critical to specify the objectives for CPC participation at the outset to ensure that the roles and activities for CPCs are targeted appropriately (Farmer J, 2017).  

Provide adequate training. It is critical to provide education for citizens-patients-communities to overcome information deficits and reduce knowledge imbalances between those who work in the health system and those who experience it (Charles C, 2017); (Umbdenstock et al., 1990). In addition, Bismark and Studdert (2014) recommended board training on quality governance that is accessible, flexible, and tailored (versus a ‘one-size-fits-all’ approach). Moreover, Knoble (1993) highlighted the need to educate boards on the importance of leadership principles and the values of an institution.  

Provide remuneration. There is evidence to suggest that remunerating council members enables them to participate in a meaningful way, by devoting a significant portion of their professional work to the role (A. Jha, 2010). Kidd et al. (2007) elaborated that appropriate funding at both government and service levels is required to support the implementation of developed models and processes that support more than tokenistic consumer involvement, including support for remuneration.  

Ensure Representativeness. There are difficulties in defining the “best” candidates or “legitimate” voices to serve as representatives on behalf of the public, and in finding a suitable mechanism to capture public representation (Anton S, 2007). To address the barriers to representative CPC participation, it is important to:  

• Articulate a clear definition of “citizen-patient-community”. 
• Specify the appropriate participant type for effective participation.  
• Clarify for CPCs how their input will be included and taken seriously (Beresford P, 1988).  
• Simplify administrative and deliberative processes within organisations, to reduce advantages to      individuals with greater economic and intellectual resources (March J G O. J. P., 1989).  
• Consider the use of demographic targets for participation (J. McClean, 2017).  

Share power and control. The interface between those who work in the health system and those who experience it is a challenge for citizen-patient-community participation in health governance. Professionals and administrators in health service and planning organizations must share power and control with CPCs if participation processes are to realize objectives of empowering users (Aronson, 1993). To address the interface between CPCs and health care professionals and to facilitate participation processes, Kidd et al. (2007) recommended the development of plans to address the power imbalances between consumers and health professionals. The authors elaborated that this could be encouraged by supporting clinicians to recognize the value in the consumer perspective, to respect experience as expertise. 

Evaluate the effectiveness of participation activities. It is important to evaluate the effectiveness of citizen-patient community participation activities to understand their success toward achieving the stated objectives, including improved decision-making and health outcomes, community ownership and empowerment, public trust and accountability, and inclusivity. The most useful indicators to measure the impact of CPC participation will vary according to the objective of the participation activity. These might include benefits to CPC participants, including learning new skills and leadership (Kenny A, 2013); outcomes for the community, including new infrastructure and health services, and implementation of a new public policy (Kenny A, 2013); and system-level outcomes, including public commitment to the health care system (Abelson J E. J., 2002); (Anton S, 2007), efficiency of the health care system (Abelson J E. J., 2002), accountability and increased local employment positions (Kenny A, 2013). 

RECOMMENDATIONS 

There is evidence that effective models of citizen-patient-community involvement in health care planning and service delivery lead to care that reflects the needs of local communities (P. Barnett, 2001); (D. Rose, 2014). There is an opportunity and a mandate to integrate citizen-patient-community-led rural health councils (and thereby, citizen patient-community voices) within the emerging infrastructure of the Primary Care Networks in British Columbia, through the objectives of quality improvement and patient-centred care. In light of the evidence presented here, we recommend the following: 

1. Rural health councils be established in alignment with B.C.’s Primary Care Networks to realize the provincial commitment to patient-centered care and to prioritize the value of citizen-patient-community voices in health care planning. These boards should: 
   1. Have the mandate of planning for local services be based on best available local data, in     conjunction with the Divisions of Family Practice and other local infrastructure to mobilize    collaboration between community agencies and institutions. 
   2. Be resourced with skilled facilitators trained to manage CPC participation and input.  
   3. Be made of a collaboratively determined ratio of appointed and elected local citizen-patient community representatives based on knowledge, skills, and demographic stratification to ensure representation. 
   4. Adhere to a province-wide framework for health council development including a shared     mandate and scope of responsibilities, but also allow flexibility to respond to local community needs. 
   5. Make stipends available to all citizens-patients-community members for their participation. 
   6. Create realistic expectations among council members, delimiting the scope of influence of the council. 
   7. Be provided with current and relevant data regarding both local health issues and how the local community fits into the larger provincial context. 
   8. Synthesize and utilize the health system data routinely collected through, for example, facilities, MSP billings and Pharmanet, alongside data on comprehensive costs to gain a clear and realistic understanding of system utilization by region and the associated outcomes. This data must be understood alongside CPC voices.  
2. Regional Family Councils be established to provide input into Long Term Care service planning and delivery. These Regional Councils should be represented on each local Rural Health Council in order to integrate long term care facilities into planning and oversight for the region. 
3. Indigenous community leadership consider the needs of Indigenous-specific rural health councils, which may mirror existing band and health council structures or may require modification to meet the renewed mandate of citizen-patient-community voices in health care planning. 
4. An accountability framework parallel to the Primary Care Network accountabilities be clearly       articulated with ultimate accountabilities for rural health councils reaching a provincial level (i.e.,     Ministry of Health, GPSC). 
5. An evaluation of the effectiveness of rural health councils be integrated into the larger evaluation metrics of the Primary Care Networks.  

REFERENCES 

A. Jha, A. E. (2010). Hospital Governance and the quality of care. Health Aff (Millwood), 29:182-187. 

A. Kenny, N. H.-S. (2013). Community Participation in Rural Health: A Scoping Review. BMC Health Services Research, 13:64. 

A. Kenny, N. H.-S. (2017). Reconceptualizing Community Participation in Primary Health. Aust J Prim Health, 23(6): i. 

Abelson J, E. J. (2002). Public participation and citizen governance in the Canadian health system. Commission on the Future of Health Care in Canada, 7:1-36. 

Aronson, J. (1993). Giving consumers a say in policy development: influencing policy or just being heard? Canadian Public Policy, 19(4):364-378. 

Beresford, P. (1988). Consumer Views: Data Collection or Democracy? In I Allen(ed.) Hearing the Voice of the Consumer. 

Charles C, D. S. (2017). Lay participation in health care decision making: a conceptual framework. CUAJ, 11:1-2. 

D. Rose, M. B. (2014). How do managers and leaders in the National Health Service and social care respond to service user involvement in mental health services in both its traditional and emergent forms. The ENSUE Study. NHR Journals Library. J G. March, J. P. (1989). Rediscovering Institutions: An Organizational Basis of Politics. New York: The Free Press. 

J. Farmer, J. T. (2017). Citizen participation in health service co-production: a roadmap for navigating participation types and outcomes. Aust J Prim Health, 23(6):509-515. 

J. McClean, K. T. (2017). Not just tea and biscuits: the Gold Coast Primary Health Network process of designing, implementing, and operating a Community Advisory Council. Aust J Prim Health, 23(6):504. 

Knoble, J. K. (1993). Breaking rural health care paradigms leads to collaboration: Interview by Donald E. Johnson. Health Care Strategy Manage, 11(5):7-9. 

M. M. Bismark, D. M. (2014). Governance of quality of care: a qualitative study of health service boards in Victoria, Australia. BMJ Qual Saf, 23:474-82. 

P. Barnett, J. R. (2001). Community Ventures in Rural Health: the establishment of community health trusts in Southern New Zealand. Aust J Rural Health, 9(5):229-234. 

1. J. Umbdenstock, W. M. (1990). The five critical areas for effective governance of not-for profit hospitals. Hospital & Health Services Administration, 35(4):481. 
2. Anton, L. M. (2007). Involving the Public in NHS service planning. J Health Org Manage, 21(4-5):470-483. 

S. Kidd, A. K. (2007). Consumer advocate and clinician perceptions of consumer participation in two rural mental health services. Int J Ment Health Nurs., 16(3):214-222. 

Note:  Health Care is a complex and constantly evolving system. This position paper is a living document that will be reviewed regularly and adapted in response to new information.