The Role of Consumers in Health Care Decision Making

This paper focuses on the results of a survey of chief executive officers and consumer board members of Ontario hospitals and community health centres regarding the role of consumers in health care decision making. The opinions of both the chief executive officer and consumer board member respondents were elicited regarding the value of consumer input in decision making for the organizations studied. Results indicate that consumer board members feel that their input into organizational decision making is valued, chief executive officers value the input of consumers, and consumer involvement in decision making is increasing. More women are now involved on boards of the organizations studied, but visible minority representation remains low on hospital boards. Consumer board members feel that their decision making is influenced by providers on the board.     

Social and political factors influencing the functioning of regional health boards in British Columbia (Canada)

Health reform is associated with changes in the way the health system works and in the roles of major stakeholders, such as governments, health professionals, and the lay public. This paper reviews the immediate relevance of these social and political elements to health boards, particularly those with lay board members; source documents include peer-reviewed articles, and government documents and news releases in Canada especially. Also presented are the perceptions of 130 regional health board members in British Columbia (BC), Canada, who responded to our 1996 survey questionnaire. Two sets of social and political factors are identified and discussed in this paper. The first set deals with the composition of health board members (qualifications, representation, and selection). Our findings suggest that there is now less attention focusing on the composition of health boards in BC. This may contribute to a re-focusing of attention on the boards' effectiveness in working with stakeholders and in influencing the health system. The other set of social and political factors deals with the relations of health boards with key stakeholder groups. The responses to our questionnaire suggest that the health boards in BC may have had some success in addressing the concerns of various stakeholder groups. However, the respondents also suggested that the stakeholder groups needed to be more understanding and involved in the regionalization (decentralization) process. Health boards that have lay representatives, including regional health authorities in Canada, face similar social and political factors immediate to their operation.     

Accidental injury: a neglected area within Primary Care Groups and Trusts?

Our objective was to assess accidental injury prevention activity within Primary Care Groups/Trusts (PCG/Ts), and current knowledge and attitudes towards accidental injuries and their prevention amongst PCG/T board members. We used a cross-sectional postal questionnaire survey design. Participants were board members of 51 PCG/Ts in Trent. The main outcome measures were prioritization of accidental injury prevention and factors influencing prioritization, perceptions of the accidental injury rates in the population served by the PCG/T, accidental injury prevention activity undertaken by the PCG/T, attitudes towards accidental injury prevention and towards the PCG/Ts involvement in accidental injury prevention, knowledge of accidental injury mortality, and beliefs in the effectiveness of interventions. Many (66%) PCG/T board members see accident prevention as the least important of the priority areas in the Government's health strategy for England. Half the PCG/Ts (49%) had formally discussed accidents at a PCG/T meeting, 34% had taken action and 29% had written an accident prevention strategy. The median number of agencies PCG/Ts were working with on accident prevention was 2. GPs held less positive attitudes about accident prevention than other board members (Z = -10.01, P < 0.001), but had a greater knowledge about injury mortality (Z = -3.92, P < 0.001). Health promotion leads had more positive attitudes towards accident prevention than other board members (Z = -3.70, P < 0.001). There were misconceptions amongst health promotion leads about the effectiveness of some accident prevention interventions. We conclude that there is little evidence of prioritization of accidents as an area for health improvement. Although some PCG/Ts are undertaking accidental injury prevention, a minority have demonstrated strategic planning with respect to accident prevention or collaboration with a wide range of agencies. Accident prevention and the PCG/Ts role within this are not viewed positively by all board members. Gaps in knowledge about accidents and their prevention are apparent. PCG/Ts will need help and support to fully develop their potential in preventing accidental injuries.     

The health planning process: are consumers really in control?

This study of the governing board of a Health Systems Agency tends to support those who argue that a numerical majority of consumers does not guarantee consumer control of the decision-making process. Empirical support stems from the fact that consumers, relative to providers, appeared to be at a decided disadvantage in three areas: 1. Consumers see themselves as experiencing greater communication problems. 2. Consumers are more likely to perceive their knowledge as being inadequate. 3. Consumers are more likely to feel intimidated by other governing board members. The consumers' disadvantages in these three areas likely diminish the amount of influence they hold. Indeed, both provider and consumer board members felt consumers held less than one-fourth of the influence on the governing board. Although consumers wanted more influence they did not desire majority control. Staff was seen as exerting most of the influence within the HSA.     

Selecting consumers for neighborhood health center boards

During the winter of 1978, a study of board members of 13 neighborhood health centers was conducted in which consumers were found to have parity of influence with non-consumers. Organized group sponsorship and backing of consumers, rather than their election or appointment, were partially responsible for this parity. Despite literature reports that organized group backing would increase the chances of "vested interest" conflicts on the board, consumers who were affiliated with organized groups were not found to be more competitive than those who were not thus affiliated. In contrast, nonconsumers with organized group backing did have a tendency to feel competitive on their boards.     

Determinants of consumer influence in a health systems agency.

An 18-month study of consumer participation and influence in a Health Systems Agency (HSA) found consumer board members to be less influential than provider board members in agency decision-making. In an effort to investigate causes of the influence deficit experienced by consumer HSA board members three issues were studied: staff attitudes toward consumer participation; board member degree of representative accountability; and board member attitudes concerning commitment to consumer participation, commitment to health planning, health services attitude, and feelings of social powerlessness. Results indicated that staff members were favorable toward the concept of consumer participation. They recognized a lack of low-income minority participation, but they did not provide support or allocate resources to enhance consumers' ability to participate. Providers were less committed to consumer participation, felt more socially powerful, and had greater representative accountability than did consumers. Several strategies for increasing consumer influence in HSA decision-making processes are proposed.     

Representation of providers on health planning boards

PL 93-641, The National Health Planning and Resources Development Act of 1974, called for broad representation of health care providers, in addition to consumers, on Health Systems Agency (HSA) governing boards. Analysis of data submitted to the U.S. Department of Health, Education, and Welfare by the HSAs indicated that HSA provider board members are not representative of the overall provider work force or general population. Direct providers outnumber indirect providers by roughly seven to one. Physicians and hospital-nursing administrators are overrepresented, and nurses and other provider groups underrepresented, in relation to their numbers in the work force. Evidence also shows that HSA provider board members are mostly white males, although nonwhites and females are significantly represented in the work force and population.     

Rural‐Urban Differences in Consumer Governance at Community Health Centers

Context: Community health centers (CHCs) are primary care clinics that serve mostly low‐income patients in rural and urban areas. They are required to be governed by a consumer majority. What little is known about the structure and function of these boards in practice suggests that CHC boards in rural areas may look and act differently from CHC boards in urban areas. Purpose: To identify differences in the structure and function of consumer governance at CHCs in rural and urban areas. Methods: Semistructured telephone interviews were conducted with 30 CHC board members from 14 different states. Questions focused on board members’ perceptions of board composition and the role of consumers on the board. Findings: CHCs in rural areas are more likely to have representative boards, are better able to convey confidence in the organization, and are better able to assess community needs than CHCs in urban areas. However, CHCs in rural areas often have problems achieving objective decision‐making, and they may have fewer means for objectively evaluating quality of care due to the lack of patient board member anonymity. Conclusions: Consumer governance is implemented differently in rural and urban communities, and the advantages and disadvantages in each setting are unique.     

The challenge of contributing to policy making in primary care: the gendered experiences and strategies of nurses

This paper explores nurses’ experiences as members of primary care organisations set up to develop and commission health services for local communities. Nurses, alongside GPs and other health professionals, were given a place on the governing bodies (boards) of Local Health Groups – a move widely welcomed by the nursing profession as long overdue recognition of the important contribution nurses and nursing could bring to the policy arena. Nurse board members faced a number of challenges in their attempts to contribute to and influence local health policy. This ethnographic study (which involved non‐participant observation of 33 board meetings and interviews with 29 board members including nurses) suggests that medical authority and control, and hierarchical power relations between doctors and nurses on the board, were seen by nurses as significant obstacles to their participation in this new policy arena. In response to their perceived lack of power and subordinate status, nurses employed a number of strategies to negotiate their participation as board members – these included ‘getting it right’, ‘achieving the right balance’, ‘self‐presentation’ and ‘unassertiveness’. These strategies reflected and reproduced gendered identities and relations of power and raise important questions regarding the influence of nurses and nursing within policy making.     

Unique governance for a national ministry. Catholic Health Initiatives' board structure empowers laity, supports mission

The three original founding healthcare systems and 10 sponsoring religious institutes of Catholic Health Initiatives (CHI) have developed an unprecedented governance model to support their vision of a national Catholic health ministry in the twenty-first century. The new organization spans 22 states; annual revenues exceed $4.7 billion. Religious institutes choose either active or honorary status before consolidating with CHI, depending on their desired involvement in the organization. Currently, nine are active and two are honorary. CHI's civil corporation comprises one representative from each active congregation. These representatives approve major changes in mission or philosophical direction. They control board membership by appointing three to five congregation representatives as sponsorship trustees, who are responsible for approving the remaining members of the Board of Stewardship Trustees. This half-religious, half-lay governing board is responsible for leading CHI. CHI has only two levels of governance, a national board and boards of market-based organizations, for instance a network of facilities with one management structure, or a community board of an individual facility. This avoids multiple administrative layers and approval processes. The organization has a civil identity as CHI and a canonical identity as a public juridic person of pontifical right, called Catholic Health Care Federation (CHCF). The governing board members of CHI, as members of CHCF, serve as the religious sponsors for all CHI health facilities. Some facilities have already been "alienated" (turned over) to CHI by their religious institutes; others will be alienated in the future. CHI's recent consolidation with Sisters of Charity of Nazareth Health System added an 11th sponsor, a sixth geographic region, and two members--one religious and one lay--to the governing board. The governance model assists such growth through the appeal of an equal religious-lay partnership and a flexible sponsorship model.     

The residential needs and preferences of persons with serious mental illness: A comparison of consumers and family members

This study reports on a systematic statewide effort to determine the residential needs and preferences of two important groups: primary consumers of mental health services and family members of consumers. Two comparable surveys regarding the residential needs of consumers were conducted. In all, 314 consumers and 459 family members participated in the survey. A comparison of the preferences of family members and consumers suggests that family members more often prefer congregate living situations and more staff support than do consumers. Consumers more often express a desire to reside by themselves without staff and without other persons who are mentally ill. While the direct comparison of preferences from these two constituencies has limitations, these data do suggest significant variability in needs and preferences voiced by consumers and their family members; discrepancies that need to be addressed by mental health policymakers and planners.     

Patient Engagement in Community Health Center Leadership: How Does it Happen?

Patient engagement in primary care leadership is an important means to involve community voices at community health centers. Federally qualified health centers (FQHCs) are mandated to have patient representation within their governing boards, while practices seeking patient-centered medical home certification receive credit for implementing patient advisory councils (PACs). Our objective was to compare and contrast how community health centers engage patients in clinic management, decision-making and planning within governing boards versus PACs. Qualitative study conducted from August 2016 to June 2017 at community health centers in California, Arizona and Hawaii. We interviewed practice leaders of patient engagement programs at their site. Eligible clinics had patient representatives within their governing board, PAC, or both. We assessed patient demographics, roles and responsibilities of patients participating, and extent of involvement in quality improvement among governing boards versus PACs. We interviewed 19 sites, of which 17 were FQHCs that had governing boards. Of the 17 FQHCs, 11 had also implemented PACs. Two non-FQHC safety-net sites had PACs but did not have governing boards. Governing board members had formal, structured membership responsibilities such as finances and hiring personnel. PAC roles were more flexible, focusing on day-to-day clinic operations. Clinics tended to recruit governing board patient members for their skill set and professional experience; PAC member recruitment focused more on demographic representation of the clinic’s patient population. Both groups worked on quality improvement, but governing boards tended to review clinic performance metrics, while PAC members were involved in specific project planning and implementation to improve clinical outcomes and patient experience. Patient involvement in clinic improvement in CHCs includes higher-level decision-making and governance through mechanisms such as governing boards, as well as engagement in day-to-day practice improvement through PACs. These roles offer differing, but valuable insights to clinic programs and policies.     

Better information for the board

Healthcare managers are making quicker, riskier decisions in an increasingly competitive and regulated environment. Questions have been raised regarding the accountability and performance of boards of these organizations, as board members are not always selected based on their competencies to guide such decisions. Adapting mission and strategy and monitoring organizational performance require information that boards get mostly from management. The purpose of this study was to examine the information that boards regularly get to carry out their functions. I obtained board documents from four not-for-profit hospitals and health systems in different boroughs of New York City. At each institution, I conducted one-hour interviews with at least three board members and three top managers. I also attended at least one board or executive committee meeting and one additional meeting, usually of the finance committee. Principal findings were that the boards get too much data, the same data that management gets, and little comparative data on performance of similar benchmarked organizations. Board members and managers are satisfied with the information that board members get and have no plans to improve their system of shaping, or the quality of, information. Key recommendations to boards and managers are: (1) boards must take greater responsibility for identifying the information that they get and how they wish to get it, (2) managers must ensure that measurable objectives are developed, against which organizational performance can be evaluated, (3) boards must get information that is targeted and shaped to better fit board functions, (4) managers must develop information sets for main service lines, (5) boards must get information on the expectations and satisfaction levels of key stakeholders, (6) boards must get better and more focused information on performance of benchmarked institutions, and (7) boards must get less hospital operating data on a monthly basis.     

Governance in non-for-profit hospitals: Effects of board members’ remuneration and expertise on CEO compensation

Although hospitals vary in terms of their governance structures, little research has focused on the effectiveness of these governance mechanisms through the study of executive contracting. Using a sample of 80 non-for-profit private hospitals in the Netherlands, I investigate whether differences in governance structures of hospitals are informative for explaining the variations in chief executive pay. After controlling for important economic determinants of CEO compensation in hospitals (i.e., type and size of the hospital, CEO type and job complexity, market conditions and performance attributes), the results suggest that CEOs on average earn more (1) when the hospital's supervisory board members receive more remuneration (a higher absolute as well as an excessive remuneration) and (2) when supervisory board members have a lower level of expertise. The findings suggest that supervisory boards are more effective in controlling agency problems (i.e., aligning CEO pay to economic conditions) when their members have more expertise, but at the same time that the monitoring function is hampered when supervisory board members receive a large (excessive) remuneration.     

Advocacy to action: addressing coordinated school health program issues with school boards

As the need for Coordinated School Health Programs (CSHP) increases, so does recognition of the importance for advocating with local school boards for their support. Identifying the diversified make up of school board members and implementing effective strategies to advocate for coordinated school health can help facilitate the successful inclusion of such a program. With increasing emphasis placed on standardized testing and the "basic" curriculum, school board members need to become aware of specific benefits a CSHP can provide their district. With the relationship between health status and academic achievement confirmed in scientific research, school boards may begin paying more attention to providing high-quality health services and health instruction for students. This article presents items to consider and steps to take before, during, and after addressing a local school board for their support in implementing a CSHP.     

25 ideas for maximizing board effectiveness

The ability to bring new board members up to speed quickly has always been a key determinant of board effectiveness. In today's marketplace, the challenge is even greater. You must prepare your entire board to navigate the rapidly changing healthcare landscape and to get out in front on challenges such as capitation, mergers and acquisitions, and integrated delivery systems. How can you make board education a successful, ongoing process, effectively delivering useful, current information in a scant amount of time? Healthcare Executive posed this question to a panel of practitioners and consultants, who offered the following 25 ways to maximize board effectiveness.     

Youth voices as change agents: moving beyond the medical model in school-based health center practice

This article describes a 34-week pilot project aimed at improving health care service delivery for adolescents by offering youth a distinct role as advisory board members who help shape policy, provide feedback, guidance, and direction to a school-based health center (SBHC) program in Boston. Freshmen were recruited to participate in a Youth Advisory Board Project that included weekly afterschool meetings. Adult supervision was provided by SBHC staff that included 2 clinical social workers and 1 youth empowerment specialist. Through this effort, students were (1) trained in nonprofit board development and governance structures; (2) urged to identify gaps in services; (3) taught to select, prioritize, and implement action projects; and (4) offered clinical support around personal issues. Students brought a wealth of life experiences, knowledge of teen attitudes, information regarding trends in risk-taking behaviors, and feedback about experiences in the SBHC. In addition, their increased awareness of the SBHC service elements led to identification of obstacles to youth participation in care, feedback regarding positive and negative health care experiences within the SBHC, as well as with external health care providers, and ideas about unrecognized needs leading to gaps in services. This experience demonstrated that young health care consumers, with support, can focus their attention and begin to utilize analytical thinking skills to shape health outcomes and inform service delivery.     

Holding health providers in developing countries accountable to consumers: a synthesis of relevant scholarship

Health care providers in low-income countries often treat consumers poorly. Many providers do not consider it their responsibility to listen carefully to consumer preferences, to facilitate access to care, to offer detailed information, or to treat patients with respect. A lack of provider accountability to health consumers may have adverse effects on the quality of health care they provide, and ultimately on health outcomes. This paper synthesizes relevant research on health provision in low-, middle- and high-income countries with the aim of identifying factors that shape health provider accountability to consumers, and discerning promising interventions to enhance responsiveness. Drawing on this scholarship, we develop a framework that classifies factors into two categories: those concerning the health system and those that pertain to social influences. Among the health systems factors that may shape provider accountability are oversight mechanisms, revenue sources, and the nature of competition in the health sector-all influences that may lead providers to be accountable to entities other than consumers, such as governments and donors. Among the social factors we explore are consumer power, especially information levels, and provider beliefs surrounding accountability. Evidence on factors and interventions shaping health provider accountability is thin. For this reason, it is not possible to draw firm conclusions on what works to enhance accountability. This being said, research does suggest four mechanisms that may improve provider responsiveness: 1. Creating official community participation mechanisms in the context of health service decentralization; 2. Enhancing the quality of health information that consumers receive; 3. Establishing community groups that empower consumers to take action; 4. Including non-governmental organizations in efforts to expand access to care. This synthesis reviews evidence on these and other interventions, and points to future research needs to build knowledge on how to enhance health provider accountability to consumers.     

Position of the American Dietetic Association: food and nutrition misinformation

It is the position of the American Dietetic Association (ADA) that food and nutrition misinformation can have harmful effects on the health, well-being, and economic status of consumers. Nationally credentialed dietetics professionals working in health care, academia, public health, the media, government, and the food industry are uniquely qualified to advocate for and promote science-based nutrition information to the public, function as primary nutrition educators to health professionals, and actively correct food and nutrition misinformation. Enormous scientific advances have been made in the area of food and nutrition, leading to a fine-tuning of recommendations about healthful eating. Consumers have become increasingly aware of the nutrition-health link and reliant on nutrition information to base their decisions, and have assumed partial responsibility for changing their eating behaviors. Unfortunately, these same trends also create opportunities for food and nutrition misinformation to flourish. News reports rarely provide enough context for consumers to interpret or apply the advice given, and preliminary findings often attract unmerited and misleading attention. Effective nutrition communication must be consumer-friendly and contain sufficient context to allow consumers to consider the information and determine whether it applies to their unique health and nutritional needs. Consistent with ADA's organizational vision that members "are the leading source of nutrition expertise," ADA recognizes its responsibility to help consumers identify food and nutrition misinformation in the following ways: (a) ADA members should provide consumers with sound, science-based nutrition information and help them to recognize misinformation; (b) ADA members need to be the primary source of sound, science-based nutrition information for the media and to inform them when misinformation is presented; and (c) ADA members should continue to diligently work with other health care practitioners, educators, policy makers, and food and dietary supplement industry representatives to responsibly address the health and psychological, physiological, and economic effects of nutrition-related misinformation.     

Quality improvement to guide the new health system

While there are many areas, such as intensive care treatment and pain management, where great gains in quality improvement can be made, the greatest strides will come as the leaders and trustees in health care organizations begin to create "the industrial revolution" in their organizations by creating cultures of quality. Stephen Shortell recommends the following list of things board members can do to improve quality in their organizations.