Health Advocacy and Health Communication for Elderly Health Care Consumers: Rationale, Demand, and Policy Implications
Gary L. Kreps, PhD
George Mason University, Department of Communication
George Mason University, Department of Communication
Health advocacy is an important set of communication activities to promote the best health outcomes for individuals confronting health threats, especially for elderly health care consumers, who utilize high levels of health care services for both chronic and acute health problems. However, many elderly health care consumers do not receive adequate advocacy support and have difficulty shaping health care policies and practices due to problems with ageism and power imbalances within health care systems, which accord far more authority to health care providers and administrators than to consumers in the delivery of care. This limits elders’ participation and influence in health care, despite research showing that active consumer involvement usually improves health outcomes. Strategic health advocacy can rebalance power within health care, developing and refining health policies and practices. The best advocacy actively represents the voices, concerns, and needs of consumers within health care systems to help make programs responsive to consumer needs. Health advocates must effectively communicate patients’ perspectives and needs to key audiences using strategic message strategies and channels to influence health policies and practices. Yet effective advocacy does not happen naturally and needs to be nurtured by relevant programs and policies to represent consumer needs for enhancing health outcomes for elderly health care consumers.
Keywords: Supporting Patient Needs, Social Support, Health Care Bureaucracy, Caregiving, Empowerment
Introduction: Health Advocacy and the Health Care System
Health advocacy is a critically important set of communication activities that provide needed information and support for health care consumers to help them negotiate the complexities of health care systems to achieve their best health outcomes from serious health threats (Kreps, 2013; Kreps & Kim, 2013). The modern health care system, which is composed of myriad health care delivery, financing, training, staffing, supply, and regulatory organizations, can be a complex, bureaucratic, and frightening landscape for patients to navigate, especially when patients are incapacitated with serious health problems that lead to pain, fatigue, nausea, imbalance, incontinence, and/or confusion that make it difficult for them to speak-up and participate actively in directing their own care. In these challenging circumstances, health advocates can provide tremendous support for elderly patients by standing up for and representing patents, who are often incapacitated by their health conditions, to help them accomplish their health care needs and wishes. A growing body of compelling empirical evidence illustrates that effective health advocacy services significantly enhance health outcomes for vulnerable patients (Dillardet al., 2018; Dohan & Shrag, 2005; Greenfield, Kaplan, & Ware, 1985; Kahanaet al., 2010; Kreps, 2003; Kreps & Chapelsky Massimilla, 2002; Kreps & O’Hair, 1995; Kreps & Sivaram, 2010; Mattson & Lam, 2015; Natale-Pereira et al.2011; Sklar, 2016; Thomas, 2019). Yet there still are limited health advocacy resources for many elderly patients, as well as insufficient relevant and effective policies and programs to promote, support, and sustain health advocacy services for consumers within the modern health care system (Conrad et al.,2019; Godinho, Murthy, & Ciraj, 2017; Sklar, 2016).
Health advocacy services are especially relevant for elderly health care consumers who often need support in navigating the increasingly complex and bureaucratic modern health care system (Kreps, 1996; 2012; 2013). Elders have a major stake in the quality of health care delivery programs since they utilize high levels of health care services for a wide variety of challenging chronic and acute health problems (Cheng et al., 2020). Sadly, elderly patients often are not accorded high levels of status and respect within health care systems due to problems with ageism and paternalism (Banerjee, D’Cruz, & Rao, 2020; Hooker et al.,2019; Kreps, 1986; 1990; Wyman, Shiovitz-Ezra, & Bengel, 2018). Moreover, elderly individuals confront many challenging health risks, often have low resistance to infectious diseases, and are also often highly susceptible to poor health outcomes (Beardet al., 2016; Cheng et al., 2020). For example, during the COVID-19 pandemic, elderly individuals were found to be at extremely high risk for both contagion and serious negative health outcomes from the coronavirus, including high levels of morbidity and mortality (Ayalon et al.,2020; Banerjee, D’Cruz, & Rao, 2020; Colendaet al., 2020; Morgan & Reid, 2020). Elderly COVID-19 patients often depended heavily on the help of health advocates and health advocacy groups to access needed care and support to confront the deadly disease (Banerjee, D’Cruz, & Rao, 2020; Blyskal, 2020; D’Cruz & Banerjee, 2020; Flatharta & Mulkerrin, 2020). This article examines the powerful role that health advocacy can perform as a critically important form of communication to enhance health outcomes for elderly health care consumers and explores how relevant programs and policies can support health advocacy services.
The Need for Health Advocacy in Modern Health Care
The modern health care system can be confusing, intimidating, and frightening for many consumers (patients and their significant others), but especially for many elderly patients, and there are often limited robust communication mechanisms for providing clear and easy access to relevant information and support to consumers for dealing with complex health problems (Kreps, 2012; 1996; 1990; 1986; Sundler et al.,2020). Communication from health care providers to consumers is often highly technical and specialized, so only those patients with especially high levels of health literacy can comprehend available messages that contain health information relevant to their care (Kreps, 2018; 1988). Elderly patients, in particular, often need help from individuals with high levels of health literacy who can explain to them critically important, but often very complex information about disease prevention, diagnosis, and treatment so these patients can make informed health decisions (Kreps, 1986; 1988; 1990; 2018; Kreps, Neuhauser, Sparks, & Labelle, 2020). Health advocates are adept at helping to perform this important information sharing function for health care consumers (Darien, 2016; Harris, Bayer, & Tadd, 2002).
Elderly health care consumers, in particular, also often face significant personal challenges in participating in directing their own care, helping to shape health care policies and practices related to their care (Adelman, Greene, & Silva, 2017; Stewart, Meredith, Brown, & Galajda, 2000). These health communication barriers are grounded in serious longstanding communication and power imbalances within the health care system that accord far more influence over health care decision-making to health care providers and administrators than to consumers (Banerjee, D’Cruz, & Rao, 2020; Edley & Battaglia, 2016; Leontiou, 2020). There are additional serious communication barriers that limit elderly patients’ active participation in and direction of their own care that are often related to problems with ageist and stereotypic perceptions of the elderly, such as limited opportunities to express their wishes and have their voices heard concerning their health care concerns and preferences, difficulties in establishing truly collaborative patient-provider relationships, challenges to understanding complex health information due to health literacy issues, and problems with paternalism within the health care system that lead to serious power imbalances (Adelman, Greene, & Silva, 2017; Edley & Battaglia, 2016; Leontiou, 2020; Colendaet al., 2020; Wyman, Shiovitz-Ezra, & Bengel, 2018).
Traditional power imbalances limit consumer participation and influence within the modern health care system despite a large body of literature that has shown that increases in active patient participation in health care and health promotion efforts can significantly improve important health outcomes (Greenfield, Kaplan, & Ware, 1985; Kreps, 1988; 2012a; 2017; Kreps, & Chapelsky Massimilla, 2002; Kreps & O’Hair, 1995; Kreps & Sivaram, 2008; Stewart et al.,2000; Street et al.,2009). Elderly patient participation in health care decision-making is often constrained by the limited expectations health care providers have about elders’ abilities to participate meaningfully in health care deliberations, problems providers may have in communicating effectively with their elderly patients, and physical challenges elderly patients may have that are related to their health conditions (Banerjee, D’Cruz, & Rao, 2020; Colenda et al., 2020; Schroyen et al.,2018). Health advocacy has the potential to help ameliorate many of the challenges that elderly health care consumers regularly confront within health care systems (Kahanaet al., 2010; Kahana, & Langendoerfer, 2018; Kreps, 2013).
The Process of Health Advocacy
Health advocacy involves the use of strategic communication practices that typically occur on two major levels of the health care system, the individual and the organizational levels (Kreps, 2013). On the individual level, health advocates communicate directly with specific patients (and their caregivers) to promote quality of care and informed decision-making for these consumers (Kreps, 2013). On the organizational level, advocacy groups and organizations engage in directed communication activities to represent the health needs of consumers who confront similar health challenges. Both the individual and organizational levels of advocacy depend on effective and strategic health communication to help promote the best health outcomes for elderly patients (Kreps, 2013; Mattson, & Lam, 2015).
The Individual Level of Health Advocacy
On the individual level of health advocacy, Personal Health Advocates (PHAs) work closely with patients and their supporters to provide relevant health information and support in the pursuit of needed care. PHAs are sometimes trained health navigators, health assistants, and health care providers, but most often health advocacy services are provided informally by untrained, but often highly dedicated, familial caregivers and friends (Petronio et al., 2004). Kahana and Kahana (2003) refers to these informal advocates as health significant others (HSOs), who often accompany patients to health care appointments and represent elderly patients, when needed, with relevant health care providers and administrators. Informal HSOs typically serve as personal advocates for elderly loved ones when they face serious health challenges and have difficulty representing their own health needs, perhaps due to reduced physical or mental capacity related to their health conditions or due to limited health decision-making authority, such as the reduced decision-making authority that young children and incapacitated elderly patients often experience (Berger, 2020; Gray, Nolan, Clayman, & Wenzel, 2019; Kahana & Kahana, 2003; Petronio et al.,2004). Due to these challenges many patients can benefit from effective personal health advocacy, and there is tremendous potential for both informal and formal health advocates to assist patients who are seeking health care services. Informal PHAs often do not only help patients in clinical settings, but also help patients at home adopt and maintain healthy behaviors to reduce significant health risks through reminders, reinforcement, education, support, and encouragement. The best informal PHAs are likely to be those who have high levels of health literacy and are familiar with the workings of the modern health care system (Bell, Whitney, & Young, 2019; Kinsella-Meier, 2019; Kreps, 2013; Moss, 2017).
Individual level health advocacy is also often delivered by formally trained health care professionals, including health navigators, consumer advocates, patient educators, home health nurses, personal trainers, social workers, chaplains, and even physicians who work closely with their patients to help promote their best possible health outcomes (Kahana et al.,2018; Luft, 2017; Schwartz, 2002; Soklaridis et al., 2018; Teague et al., 2019). Kahana, Yu, Kahana, and Langendoerfer (2018) found that elderly patients generally prefer having their personal physicians serve as PHAs for them since they trust their physicians to look out for their interests and are confident that their physicians have the requisite knowledge to effectively navigate the complex health care situations. Research has demonstrated that formal health advocates can dramatically enhance health consumer satisfaction, understanding, quality of care, and improve important health outcomes (Dohan & Schragg, 2005; Natale-Pereira et al., 2011). Yet the need for health advocacy services outruns the availability of such services, resulting in a tremendous need to develop relevant programs and policies to support formal delivery of health advocacy in health care systems to make sure that the best advocacy services are available and provided to elderly patients who need support (Dillard et al., 2018; Kreps & Kim, 2013; Thomas, 2019).
Individual level health advocacy, delivered both informally and formally, can provide valuable support for elderly health care consumers to help these consumers receive relevant health information, advice, and the best care to promote their health and well-being. PHAs depend on their strategic communication skills to gather relevant information concerning elderly consumer’s health concerns, interpret health care recommendations and advice, share this information clearly and compellingly with consumers, and to serve as a liaison between consumers, health care providers, family members, and health care system administrators (Kreps, 2013; Mattson, & Lam, 2015). PHAs often serve a multitude of specific functions for elderly patients, including making an array of arrangements for patients within health care delivery systems, helping to schedule patient health care services and appointments, coordinating care from different specialists (such as, therapists, surgeons, nutritionists, pharmacists, and many others), accompanying patients to appointments, arranging patient transportation to health care settings, negotiating health care billing issues, picking up and delivering medications and health care supplies for patients, providing patients with relevant health information in ways patients can understand to help patients make informed health decisions, filling out needed forms, explaining patients’ perspectives to health care providers and administrators, answering patients’ questions about health advice provided to them by health care providers, and searching for relevant health information for patients (Kreps, 2013; Mattson & Lam, 2015).
Organizational Level Health Advocacy
The organizational level of health advocacy involves Health Advocacy Groups and Organizations (HAGOs) that raise money to fund research, education, treatment, and support services related to health care and health promotion for health care consumers (Kreps & Kim, 2013; Kreps et al., 2012; 2013). HGOs often lobby government agencies and health care systems to help establish relevant health care delivery regulations and programs to support the health needs of patients who these organizations represent. HAGOs often establish important patient education and support programs and resources for patients and for patient caregivers. They also encourage (and sometimes fund) needed health research to expand knowledge, prevention, and treatment for the health care issues their members face. Formal advocacy organizations also can help to facilitate refinements in health care delivery system programs, practices, and policies. Some of the larger and most well-established health advocacy organizations have become familiar names to the public, such as the American Cancer Society, the Susan Komen Foundation, the Alzheimer’s Association, the American Heart Association, the National Kidney Foundation, and the National Alliance on Mental Illness. These HAGOs often serve the needs of elderly health care consumers (both patients and their health significant others), and these advocacy organizations have become particularly important for helping elderly patients navigate the complex health care challenges they have faced recently during the COVID-19 pandemic (Banerjee, D’Cruz, & Rao, 2020; D’Cruz & Banerjee, 2020).
There are also narrowly focused HAGOs that support the needs of patients and families confronting specific health care concerns, such as the Alzheimer’s Association, the Pancreatic Cancer Action Network, and the Susan G. Komen Breast Cancer Foundation. Both the broader and more narrowly focused HAGOs are complex organizational enterprises that depend on strategic communication activities to support health care consumer needs, such as working cooperatively with media representatives to raise awareness about key health issues of importance to their members, advancing the growth of health care knowledge and disseminating new information about the diseases they represent to key audiences, engaging in the design and implementation of complex fundraising and health promotion campaigns, and working collaboratively with key representatives of health care delivery systems and health research organizations (Kreps, 2013; Mattson & Lam, 2015; Wallack et al.,1999).
There is a long history of cancer-related health advocacy activities in the U.S. that have powerfully influenced relevant health care research, as well as the development of important health policies and practices that are relevant to addressing the health needs of elderly consumers (Kim, 2007). Cancer is largely a disease of aging, so many cancer advocacy organizations very actively serve the needs of elderly cancer patients and their caregivers (Anisimov, 2020; Levit, Singh, & Klepin, 2020; Lund, 2019). For example, the American Cancer Society (ACS), which was founded in 1913 as the American Society for the Control of Cancer by a group of prominent physicians and business leaders, has developed many influential programs to enhance the quality of cancer care and provide support to cancer patients. Prominent individuals have also had major influences on consumer advocacy by establishing influential health advocacy organizations. For example, Mary Woodward Lasker, who founded the Citizens Committee for the Conquest of Cancer when her husband Albert Lasker died from intestinal cancer in the early 1950s, was instrumental in promoting the introduction of the National Cancer Act of 1971 in the U.S. that was signed into law by then President Richard Nixon. This landmark federal legislation initiated the national “War Against Cancer,” which has spurred the development of important health organizations (such as the National Cancer Institute of the National Institutes of Health in the U.S.), the expenditure of billions of dollars of federal funding for important cancer research, the development of new cancer treatment strategies and medications, as well as the establishment of myriad new programs to support cancer prevention and control. However, it must be noted that it was not easy for individual advocates or their health advocacy organizations to accomplish such sweeping influences on public health policies. It took concerted strategic communication efforts, including the development of effective media relations programs, fundraising efforts, lobbying strategies, and the establishment of powerful public/private partnerships to achieve these important health promotion goals.
The Communication Demands for Effective Health Advocacy
Evidence suggests that both individual PHAs and organizational HAGOs have the potential to use health advocacy to help address many of the health problems that elderly health care consumers confront if they can meet the strategic communication demands of effective health advocacy (Kreps, 2013; Parvanta, Nelson, & Harner, 2017; Servaes & Malikhao, 2010). PHAs typically use strategic interpersonal communication to support the health needs of individual patients and families, although they also often communicate with groups (such as health care teams) and organizations (such as insurance companies) to achieve advocacy goals (Kreps, 2013). HAGOs also use different media channels and technologies strategically to represent the needs of groups of health care consumers, typically on organizational and even societal levels to achieve advocacy goals (Kreps & Kim, 2013). These individual and organizational health advocacy activities can help to recalibrate the traditional imbalance of power in health care and health promotion efforts as a powerful social mechanism for supporting consumer-driven participation and change within health care systems (Kahana et al.,2018; Kim, 2007; Moss, 2017; Teague et al., 2019).
Health advocates (both on the individual and organizational levels) also depend on strategic interpersonal communication to achieve their advocacy goals. Individual level and organizational level health advocates must learn how to actively represent the voices, concerns, and needs of the consumers they represent within the health care system (Kreps, 2013). This means establishing meaningful and trusting interpersonal communication relationships with the individual patients who advocates represent, to learn about these patients’ unique goals, expectations, and concerns, as well as to learn about the best ways to communicate relevant health information to specific patients to promote high levels of health information comprehension and informed decision making (Kreps, 2012; 2013; 2018). Advocates also have great opportunities to help make health care programs responsive and adaptive to consumer needs through strategic health communication with health care providers, heath system administrators, and policy makers (Kreps et al., 2012; 2013). For example, strategic health advocacy communication can be used to help promote important influences on the development and refinement of important health policies and practices. To achieve their policy goals, health advocates strive to communicate patients’ perspectives and needs in compelling ways to key audiences using a variety of different communication channels and media to influence often entrenched health policies and practices (Kreps, 1996; 2013).
Sharing Relevant Health Information
Communication is at the center of effective health care and health promotion with elderly patients, because communication provides elderly consumers and their health care providers with the relevant health information that these health care system participants need to generate the best care and make their best health decisions (Kreps, 1988). Relevant and timely health information is a critical resource in health care and health promotion because it is used to guide health care provider decisions about diagnosis and treatment, as well as by elderly health care consumers to help them make important informed choices concerning preventing health risks, promoting their health, and for selecting their best health care treatments. Health information includes the knowledge gleaned from health care interviews and laboratory tests used to diagnose health problems, the precedents developed through clinical research and practice used to determine the best available treatment strategies for specific health threats, the data gathered in checkups used to assess the efficacy of health care treatments, the input practitioners and consumers need to evaluate bioethical issues and weigh consequences in making complex health care decisions, the recognition of warning signs needed to detect imminent health risks and to encourage adoption of health behaviors to help avoid these risks. Health care providers and consumers depend on their abilities to communicate effectively to generate, access, and exchange relevant health information for making important treatment decisions, for adjusting to changing health conditions, and for coordinating health-preserving activities. The use of strategic, evidence-based communication also enables effective dissemination of relevant and persuasive information appropriate to specific patients, providers, and other key audiences to influence health knowledge, attitudes, and behaviors. Health advocacy communication activities support the critically important health information needs for elderly health care consumers and for their caregivers.
Access to and effective use of relevant, accurate, and timely health information is essential for guiding the important health-related decisions that elderly health care consumers and their formal and information caregivers must make across the continuum of care (including the important interrelated care stages of Prevention, Detection, Diagnosis, Treatment, Survivorship, and End-of-Life) to promote health and well-being (Kreps, 2003; Kreps & Sivaram, 2010). This includes guiding decisions about the prevention of health risks, health promotion behaviors, the detection and diagnosis of health problems, health care treatment strategies, and best practices for living with health threats (successful survivorship) (Kreps, 2003). Yet health information is often exceedingly complex, with many different health risks, each with different causes, stages, symptoms, detection processes, and treatment strategies. Health care knowledge is also rapidly evolving with advances in research and applications concerning the unique etiology, prevention, detection, diagnosis, and treatment of health problems for the elderly. It is extremely difficult for elderly health care consumers, as well as for many health care providers, to stay abreast of all the health information they need to make their best health decisions. They need support to manage the complex and evolving health information environment. Health advocates are essential for helping to assist with gathering, interpreting, and applying relevant health information (Kreps, 2013).
A primary goal of health advocacy organizations is to help break through the complexity of health and health care by disseminating relevant, timely, accurate, and clear health information to consumers and providers to help guide informed health decision making. However, there are significant barriers to the effective dissemination of health information, especially for elderly at-risk populations, due to problems they often have that limit their access to health information based upon health literacy challenges they often face, limited education levels, and the complexity of health research and health care processes (Kreps 2012; 2006; Wen et al., 2010). Health advocates must develop strategic communication programs for gathering relevant health information, interpreting that information, and presenting the information in meaningful ways to those health care participants who most need that information for guiding important health decisions.
Using Communication to Navigate the Modern Heath Care System
Health advocates must be able to demystify the medical jargon, complex structures, and bureaucratic processes that have developed over-time for delivering care and promoting health in the modern world that can be confusing and frustrating for many elderly health care consumers (Kreps, 2013). These complex health system structures are likely to operate quite differently from one location to another, particularly across different health care facilities and in different locations. Advocates must learn about local norms, regulations, and jargon wherever they are providing advocacy support so they can provide the best advice. Effective advocacy demands the ability to collect information and adapt communication practices to the different ways that health care delivery systems are organized and managed, the ways that health care services are financed, the ways that relevant treatments, medications, and technologies are developed, tested, and implemented, the ways that research programs are conducted to study health care and the promotion of health, as well as the ways that regulatory mechanisms and guidelines for governing the delivery of care are implemented (Kreps et al., 2012; 2013).
The complexities of modern health care systems often demands that health advocates for elderly consumers must be able to gather a great deal of complex information about a broad range of different health care systems and practices. They must learn about a wide range of different relevant health industries, including health care delivery systems, pharmaceutical companies, insurance organizations, and medical technology and supply industries. They need to learn about the many local, regional, and national government agencies that regulate heath care. They need to understand the ways that research programs are conducted to study health care tools, treatments, and processes. Moreover, they must learn the best ways to communicate with representatives of these different interrelated health care systems to promote cooperation and partnerships for refining health care practices and policies for elderly patients. In addition, health advocates need to understand the best ways to disseminate relevant information about the health care system to key audiences, particularly in reference to specific elderly health consumers’ needs and concerns. There is clearly a lot of information for health care advocates to gather and make sense of, as well as to strategically communicate to key audience to effectively advocate for meeting the health needs of elderly consumers!
Interpersonal Communication Competencies for Health Advocacy
Health advocates depend upon engaging in effective interpersonal communication to develop meaningful and cooperative health advocacy relationships with elderly patients, their HSOs, health care providers, administrators, and many others to achieve their advocacy goals (Kreps, 2013). Health advocates cannot possibly accomplish the complex goals of influencing health care policies and practices to support the needs of elderly health care consumers all by themselves. They need to use strategic communication partnerships to actively encourage a range of key individuals, including patients, health care providers and administrators, policy makers, and volunteers, to collaborate in sharing advocacy messages and supporting advocacy causes. In addition, advocacy group leaders need to motivate, train, direct, and supervise these key individuals to ensure they work effectively and cooperatively to achieve advocacy goals. The demand for health advocates to use well-honed relational communication skills to coordinate advocacy efforts is illustrated well in predictions proposed by the Relational Health Communication Competency Model (RHCCM) that postulates that the use of competent interpersonal communication among interdependent participants in health care systems can promote needed cooperation for achieving important health goals (Kreps, 1988; 2014;; Query & Kreps, 1996). The predictions from this model about the powerful influences of relational communication on achieving health outcomes also suggest that competent and adaptive interpersonal communication skills are needed to build meaningful health relationships, share relevant health information, motivate cooperation, and influence behaviors to achieve health advocacy goals (Kreps, 2013; Kreps et al., 2012). Therefore, it is critically important to help health advocates and the elderly consumers they serve learn how to communicate effectively interpersonally to build cooperative health relationships.
Utilizing Media Effectively for Health Advocacy
Popular media (news, entertainment, and social media) are primary tools for disseminating relevant health information concerning the health needs and issues affecting groups of elderly health care consumers. The right media coverage using the best media channels can be instrumental in helping advocates reach and influence key audiences (Gallant et al., 2011; Houston Staples, 2009; Stellefson, Paige, Chaney, & Chaney, 2020; Wittet et al., 2017). For example, advocates can use popular media to reach people who are concerned about the issues relevant to effective care for elderly patients to encourage these audience members to serve as potential advocacy group members and volunteers. They may need to reach potential donors to generate financial and material support for advocacy efforts. They may also need to use the media to motivate public support for relevant legislation and policies, as well as to encourage support from key public officials. However, it is not easy to control media messages and media coverage. Strategic communication partnerships and carefully designed messaging is needed to promote cooperation between media producers and health advocates.
The most direct way to control media coverage would be for advocacy organization leaders to purchase media spots and advertising. Unfortunately, this can be very expensive, especially when paying for the use of dramatic and popular entertainment media, particularly television and film time, and to a lesser extent radio time. Another strategy for getting media coverage of issues relevant to elderly health care consumers is for advocacy organization leaders to seek free coverage by presenting advocacy messages as relevant news items. For example, advocacy leaders might submit public service announcements to media outlets for free dissemination. Unfortunately, public service announcements, even when accepted for presentation, rarely gain much exposure because they are typically programed for inexpensive (low viewership) presentation time periods. It is much more cost effective for health advocacy leaders to encourage free news media coverage of issues relevant to elderly health care consumers by earning it through the use of media advocacy to persuade media representatives to cover advocacy issues (Dorfman, Wallack, & Woodruff, 2005; Wallack et al., 1993).
Media advocacy is an intricate communication strategy to motivate mass media representatives to cover key stories that enhance the visibility and legitimacy of health advocacy organizations issues by pitching stories that are relevant, timely, dramatic, and attractive to these media representatives because these stories promise to appeal to key audiences. In essence, advocates try to create newsworthy messages concerning health issues of concern to elderly consumers that media representatives will want to cover as relevant and interesting stories. By building cooperative relationships with media representatives, staging newsworthy events, linking advocacy group issues to breaking news or existing stories, as well as by providing compelling editorial pieces and commentary on relevant issues, health advocates can encourage media coverage of advocacy policy issues that are especially relevant to elderly consumers, such as stories about access to needed and effective care, new and affordable treatments and medications, home health care services, long-term care needs, mental health needs and services, and the need for rehabilitation equipment and services (Applebaum et al., , 2020; de Carvalhoet al., 2017; Kahana, 2020). (All of these important elder health topics have been covered by media news channels during the COVID-19 pandemic).
Advocates can also encourage media advocacy coverage by preparing relevant story summaries, press releases, and media kits for media representatives that make it easy for these representatives to cover the advocacy group stories (Houston Staples, 2009). They can provide succinct and persuasive summaries of advocacy organizations’ positions of key public issues. They can distribute relevant fact sheets that provide compelling data and evidence in support of key issues they want covered. They can provide interesting press releases, with names and contact information of potential sources for the stories. They can also provide relevant background articles to media representatives, as well as providing clear and compelling background information about the advocacy organization.
By encouraging voluntary media coverage, health advocates hope to encourage key support for the health advocacy of elderly consumers. The goal is to use free media coverage to influence and shape public debate, put pressure on policy makers, and encourage community support for the consumers’ key issues. Media coverage can help set the public agenda concerning health advocacy concerns by raising awareness about key elder care issues, encouraging public discussion of these issues, and influencing private conversations about the issues to motivate support for social change (Wallack, et al., 1999).
Building cooperative collaborations with media representatives (in accordance with the postulates of the RHCCM) is critically important for motivating effective media coverage of health advocacy issues (Kreps, 2014). There are several key questions that health advocates need to be able to answer to attract media coverage of health advocacy issues. These include: Who are the media representatives for the media outlets that advocates want to cover important health advocacy issues? Are the messages they want covered right for the specific medium selected? Who are the audiences these media channels serve? What kinds of stories do these media outlets want to cover? What problems do advocates want to have addressed by the media? What are the ideal solutions to these problems? Who has the power to address these issues to promote relevant social change? What messages would convince these key audiences to act on these issues? Do the media messages that advocates want covered have “news value” for the audiences the media outlets serve? How can stories be pitched effectively to key media outlets? Can advocates help media representatives cover these stories well? Are requests for media coverage responsive to the many constraints that media systems face (such as media time/space available for presenting stories, the topics media outlets prefer to cover, the appropriate complexity of stories for audiences, including both ideas, visuals, and language used)? This means that advocates must pitch stories that are appropriate for specific media and the audiences they serve. Advocates need to provide media outlets with good visuals, soundbites, and/or compelling personal testimony to humanize the stories. To utilize media channels effectively, health advocacy leaders must be able to design compelling messages and encourage media support for disseminating relevant elder health messages to key audiences.
An increasingly important channel for communicating health advocacy messages relevant to the needs of elderly consumers is the use of digital, social, and e-health media (Stellefson et al., 2020). For example, websites have become a ubiquitous and pervasive part of the communication mix for health advocacy organizations (Gallant, Irizarry, & Kreps, 2007). The website is critical in helping to establish an identity for the advocacy organization and it is also can serve as a primary portal for communication with key constituents if it is designed to be interactive and easy to utilize. Unfortunately, too many health organization websites do not effectively utilize strategic interactive e-health communication features and fail to maximize communication with key audiences (Kreps & Neuhauser, 2010). Many health websites fail to be particularly interactive, engaging, or dynamic (Gallant et al., 2011). These e-health problems are particularly challenging for many elderly health care consumers, who may not have well-developed digital communication competencies (Song & Shin, 2020). To be effective, digital health programs must be designed to leverage the abilities of digital media to communicate vividly, interactively, and adaptively for different populations of users through the use of specially designed mobile and interactive applications, video, tailored message systems, message boards, social media, digital training, and user support systems (Kreps, 2000; 2017; Kreps & Neuhauser, 2010). For example, the use of tailored information systems, with messages that reflect the unique interests and backgrounds of different individuals, can allow health advocates to adapt online communication to meet unique needs, interests, orientations, and backgrounds of different audiences, ensuring that online communication is personal and relevant to meet the information needs and digital literacy skills of users (Kreps, 2000).
The website has morphed in recent years from being a mere repository of health information to being a portal to a range of exciting communication opportunities to connect, inform, and engage constituents of health advocacy groups (Kreps, 2017). For example, health advocacy websites can be designed as an entry point for access to online support groups, discussion boards, webinars, news feeds, and social media for elderly consumers and their caregivers. Online support groups have become a staple health communication medium for many health advocacy organizations, enabling constituents who are confronting challenging health issues to connect with others confronting similar challenges to exchange ideas and to provide needed social support (Kreps, 2017). Online support groups have become an important source of contact and interpersonal communication for many isolated elderly individuals, especially during the COVID-19 pandemic (Armitage & Nellums, 2020). Evidence suggests that online support groups can be even more effective for supporting the information and support needs of health care consumers than in-person support groups because they afford group members greater freedom to connect when they are in need, eliminate the need for travel to participate in the support group, and afford support group members a higher level of privacy and anonymity than in-person support groups (Wright, 2016). Perhaps one of the greatest opportunities to health advocacy organizations is to leverage the use of digital media to promote collaborations, through the sharing of relevant information and the building of social action partnerships to promote change (Neuhauser & Kreps, 2010). As technology advances, there will be increasing opportunities to adopt new and powerful digital communication applications to promote the use of strategic communication to achieve the goals of health advocacy for elderly health care consumers and for their caregivers.
The Demand for Health Advocacy Programs and Policies
Health advocates serve a vitally important role for representing the needs of elderly health consumers within the modern health care system, refining relevant public policies, and improving quality of care and the promotion of health. However, effective health advocacy depends on the strategic use of health communication to gather relevant health information and to disseminate key information to important audiences in ways that will motivate cooperation and support for health advocacy policies and programs. Effective advocacy demands effective health communication to elicit cooperation, gather and share relevant health information, adapt to complex health settings, and utilize media to disseminate information to key audiences.
Health Advocacy Training Programs
Health advocacy training programs have been developed that show promise for promoting the development of effective health advocacy communications skills and competencies. Several universities now offer certificates or graduate degree programs in health advocacy, including Johns Hopkins University, Assumption University, Sarah Lawrence College, the University of Illinois at Chicago, and the University of Wisconsin. Several non-profit organizations also offer health advocacy training. An example of an advocacy training program that focuses on the development of relevant strategic communication advocacy competencies is the Global Advocacy Leadership Academy (GALA) that provides no-cost online and in-person training for health advocacy group leaders (Kreps & Kim, 2013; Kreps et al., 2012; 2013;). The GALA training program adapts communication education to the unique advocacy environments in different health care settings and countries, working adaptively with health advocates to address their specific advocacy challenges (Kreps & Kim, 2013). Similarly, in recent years a number of important advocacy training programs have been developed to help health care professionals develop the communication skills needed to be effective health advocates (Blenner, Lang, & Prelip, 2017; Godinho, Murthy, & Ciraj, 2017; Masai et al., 2017; Soklaridis et al., 2018).
Organizations That Promote a Culture of Health Advocacy
Relevant programs and policies are also needed to support health advocacy activities and encourage adoption of a strong culture of health advocacy within the modern health care system. This is being accomplished by a variety of different organizations that provide health advocacy promoting programs and activities. For example, Thomas (2019) describes the efforts by the professional organization for health educators, the Society for Public Health Education (SOPHE), to hold health advocacy summits that encourage research, education, and outreach activities relevant to increasing understanding, conducting research, sharing information, and initiating health advocacy projects to mobilize the next generation of health advocates. This kind of professional activity helps to promote recognition about the importance of health advocacy and helps to recruit professionals to participate in health advocacy activities.
Similarly, the Patient Advocacy Foundation (PAF) is a national non-profit organization that helps to promote a strong culture of health advocacy, both by providing health advocacy case management services and financial aid to Americans with chronic, life-threatening, and debilitating illnesses, and through its sister organization the National Patient Advocate Foundation (NPAF) which advocates for policy solutions to common problems facing patients concerning health care access and affordability (Patient Advocacy Foundation, 2020). In addition, the PAF and the NPAF provide health advocacy information and education through its websites, publications, webinars, and meetings.
The National Association of Healthcare Advocacy (NAHAC) is another non-profit organization that has helped to promote a culture of health advocacy by establishing a community composed of practicing health advocates and those interested in learning about health advocacy to promote professional development of health advocates, advance the field of health advocacy, empower consumers to navigate the health care system effectively, influence public policies in support of patient-centered care, and to serve as a clearinghouse to help consumers locate health advocates through there National Directory of Healthcare Advocacy. The NAHAC holds conferences, educational roundtables, and networking activities for health advocates and have established best practices for health advocacy (National Association of Healthcare Advocacy, 2020).
The American Public Health Association (APHA) is a professional organization for public health scholars and practitioners that has been very active in addressing health advocacy policy issues as a primary voice for public health advocacy to ensure access to care, protect funding for core public health programs and services, and eliminate health disparities (American Public Health Association, 2020). The APHA works on health policy advocacy primarily by conducting health advocacy campaign activities, lobbying legislators, disseminating legislation action alerts and APHA policy statements, and by hosting APHA legislative and advocacy priorities update webinars.
Several health care delivery systems have introduced health advocacy services for their patients, especially for elderly patients who often need assistance, using patient navigators (Freeman, 2006), hospital chaplains (Teague et al., 2019), nurses (Abbasinia, Ahmadi, & Kazemnejad, 2020), and physicians (Luft, 2017) as patient advocates, resulting in improved health outcomes. For example, Harold Freeman (2006) famously introduced the nation’s first patient navigator program at Harlem Hospital in New York City in 1990, which was so successful that it served as a model for the Patient Navigator Outreach and Chronic Disease Prevention Act signed into law by President Bush in 2005. The Harlem Patient Navigator Program was designed to help poor Black patients, often elderly Black patients, access needed cancer screening and care, resulting in significantly improved health outcomes for early detection of cancer and reductions in both morbidity and mortality for both breast cancer and colon cancer (Freeman, 2006; Freeman & Rodriquez, 2011). These programs show that hospital-based health advocacy services are effective and should be expanded for vulnerable patients! These hospital-based programs are most appropriate for use with older patients who may need help negotiating complex health care system due to infirmity, co-morbid health conditions, and/or health literacy challenges (Kreps, 1986; 1990;).
There is great need and potential for additional efforts to promote health advocacy education, practice, and policy to establish a strong and well-established societal culture for health advocacy for elderly health care consumers. We appear to be building momentum through the health advocacy efforts of a variety of professional associations, non-profit organizations, educational institutions, and health care delivery systems to support competent health advocacy services to enhance consumer access to and participation in health care for improving health outcomes. Health advocacy programs and policies are warranted to support the health care needs of elderly health care consumers who often need support in negotiating the modern health care system to achieve their health care goals.
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