Reviewing Models of Patient Advocacy: Current Successes and Future Directions for Applying Community Health Workers and Patient Advocates to Advance Health Equity

Abstract

Introduction:

Health equity interventions aim to mitigate health inequities with evidence-based approaches. Patient advocacy is one such approach, and its goal is to empower patients to make informed decisions about how they engage their health care with support from a liaison between the health care team and the patient. While nurses have predominantly held this role, community health workers (CHWs) and patient peer advocates (PPAs) are also now being used as patient advocates to help lead patient-centered interventions. Studies have demonstrated that both CHWs and PPAs can benefit patient outcomes.

Methods:

In this article, we compare these two types of patient advocacy models and suggest that the differences between them may make them particularly useful for addressing different barriers to care among patients. We briefly review studies looking at the strengths of these two types of advocacy models and describe the only article we identified comparing the use of CHWs with PPAs, although even this was among differing intervention designs.

Implications for Future Research:

It is important for research to begin comparing the efficacy of these two models among congruent interventions to unveil which type of patient advocate has the strongest impact in alleviating particular barriers to care and enhancing patient health outcomes. By identifying the most efficacious type of patient advocate across different roles and settings, interventions will hopefully be better informed and more effective in achieving health equity.

Case Study

The underrepresentation of minority patients with lupus in lupus clinical trials (LCTs) is a persisting disparity that lessens the ability of the U.S. Food and Drug Administration to identify and approve efficacious treatments for these groups.^1,2 One reason for this underrepresentation of minority patients in LCTs is the existence of patient-level barriers to participation in clinical trials among minority patients including health literacy, historical distrust, and a lack of knowledge about LCTs.^3,4 We have conducted a series of interventions aimed at mitigating these barriers by training two types of advocates—community health workers (CHWs) and patient peer advocates (PPAs) to serve as informational liaisons for racially and ethnically diverse patients with lupus.

We have found that CHWs can improve cognitive outcomes theoretically related to conducting outreach and advocacy related to LCTs, ⁵ and we have found that PPAs are effective at connecting with patients and increasing their knowledge about and understanding of LCTs and their importance in guiding new effective treatments. ⁶ However, while we have found that both types of advocates can be effectively trained to deliver health equity–driven intervention, we are unable to directly compare these models due to differing study designs. This led us to consider what the scientific literature says about the strengths of each model, and whether either type of advocate is more effective in addressing particular barriers to care among patients. The strengths of these different types of advocates have been confirmed in fields addressing other health concerns including substance abuse, ⁷ hearing loss, ⁸ chronic disease,^9–11 mental health,^7,12 and even assisting in pandemic responses. ¹⁰ Although we did not conduct a full systematic review, we were unable to identify any studies comparing the efficacy of these two advocate models among congruent intervention designs. So, while there is wide support for both models of patient advocacy across various fields, to our knowledge, there has been no comparison of the two advocate models of whether one may be more efficacious than the other in achieving particular outcomes.

This article provides a stepping stone for comparing the efficacy of different patient advocacy models within the clinical setting. We briefly describe the history of patient advocacy and the definitional and experiential differences between CHWs and PPAs. We explore the overlapping roles of different patient advocates, then briefly review studies that have looked at patient health outcomes related to CHW- and PPA-provided advocacy. We conclude by suggesting several avenues for evaluating and contrasting the effectiveness between CHWs and PPAs. This is an important focus for health equity research because identifying the unique strengths of each type of patient advocate in mitigating health inequities across a variety of health fields and settings can inform their assignment to their optimal and most efficacious roles.

Background

Health equity can be defined as a state in which everyone has fair access to the resources necessary to achieve the greatest emotional, social, and physical well-being possible. ¹³ Interventions that aim to mitigate health inequities rely largely upon proven, evidence-based strategies. One such strategy for targeting health inequities across multiple fields of health is patient advocacy. The main goal of patient advocacy is to empower and enable patients to make their own informed decisions about their health care by bringing someone into the care team to serve as a liaison between the patient and health care team. ¹⁴ Patient advocates may teach patients about their condition and treatment options or help them access services and overcome barriers to receiving treatment.

Concept analysis of patient advocacy has contended that patient advocacy is achieved when three essential assistive roles are present: valuing, appraising, and interceding.^14,15 These roles are interrelated and may look different based on the settings they occur in, the goals of the advocacy, and the desired effects of the advocacy intervention. Patient advocates connect individually with patients helping provide more personalized care and assist patients in seeing the value in seeking treatment and engaging the health care system. Patient advocates do this by apprising or informing patients about their condition, relevant treatments, and services that may make accessing treatment easier. When necessary, patient advocates may also have to intervene and serve as a bridge between patients and services, helping with communications, logistics, and so forth.

The term “patient advocate” has historically been used in reference to nurses; however, as patient advocacy has evolved and matured as a specific helping strategy, distinctions have been made regarding who serves as the patient advocate. Because the type of individual playing the role of patient advocate may have a tremendous impact on advocacy outcomes, we briefly explore the use of three different types of patient advocates: (1) Registered nurses (nurses), who have held patient advocate roles the longest; (2) CHWs, who are respected members of underserved communities that are specially trained to support and provide advocacy for individuals in their communities; ¹⁶ and (3) PPAs, who may be defined as experts by experience because they have experienced similar struggles as the patient in terms of condition, illness, or treatment. ¹⁷ The role of nurses as patient advocates is well-documented in research along with the possible cultural mismatch and differential power dynamics of nurses as medical professionals.^18,19 This article focuses on the unique strengths of lay health workers—CHWs and PPAs—as a health equity–building approach.

Brief History of Patient Advocacy

It can be said that patient advocacy began with the informal formation of support groups, uniting patients with common illnesses/conditions to assist new patients or patients with less personal agency. ¹⁴ The success of these groups demonstrated to clinicians that taking extra steps toward patient engagement could result in better patient satisfaction with the health care system and use of its services. ¹⁴ Registered nurses often have the most contact with patients receiving care and naturally advocate their patients’ needs in their professional role. Thus, nurses have been an obvious choice to serve as patient advocates to address health inequities.

However, while nurses already have the expertise to help patients navigate the health care system, there is often disconnect in background, culture, or language; especially when working with patients from underserved populations experiencing health inequities. The Affordable Care Act has increased the number of racially and ethnically diverse patients who are receiving care. ²⁰ Because of this, it has been noted that many nurses will require additional training on cultural awareness, how to communicate with patients who speak different languages, and relevant differences in customs and expectations among these groups. ²¹ Furthermore, nurses have many professional obligations and may not always have adequate time or resources to effectively advocate for all patients. For these reasons, CHWs and PPAs have been tapped as a vital resource for connecting health professionals with hard-to-reach groups/communities.

The utilization of CHWs has varied since the 1960s when the U.S. federal government first endorsed their role in expanding access to health care to address health disparities among underserved populations. ¹⁶ CHWs often go by a multitude of names including health care workers, community health educators, public health aides, promotores de salud/promotoras, and peer advocates. ²² Driven by the success of CHW models in the community, CHW roles have more recently expanded into the clinical settings as health care navigators. Research has shown that integrating CHWs into comprehensive care teams can benefit patient health and behavioral outcomes, ²³ while decreasing costs by reducing emergency department use ²⁴ and hospital readmissions. ²⁵

Peer-to-peer advocacy narrows the social divide between advocate and patient even further by using patients themselves as advocates for other patients. These relatable experiences place PPAs in a unique position to better empathize with patients and help empower patients to engage in their own health care.

Roles of Advocacy

With CHWs and PPAs being brought into clinical care teams to help engage patients, research should assess which roles are best practiced by nurses and which are best carried out by CHWs and/or PPAs. It is likely that medical and drug-related information is best provided by a medical professional, while community-based CHWs may better handle systematic information regarding community resources, services, and promotion of opportunities for care. Because PPAs have the shared experiences of the targeted illness and seeking relevant treatment, this group of patient advocates may be especially adept at providing individualized support including helping patients understand their condition, manage their symptoms, and value the importance of seeking further care.

A Theoretical Framework of the Various Roles of CHWs and PPAs

In this section, we review several frameworks and theories that have been used to guide the roles of patient advocates in promoting health behavior change. The overarching theme across these theories as applied to patient advocacy is that the more relatable the deliverer of advocacy is to the patient the better the advocate may empathize with the patient, and the more likely the patient is to trust, engage with, and derive benefit from such interactions.

Katigbak and colleagues proposed a conceptual framework for the role of CHWs in facilitating the adoption of healthy behaviors among patients. ²⁶ This framework centers around the ability of CHWs to create partnerships in health and argues that the primary mechanisms driving the success of such partnerships include congruence of language, community, and culture—all of which assist in fostering trusting therapeutic relationships between the CHW and the communities they serve. ²⁶ As a conceptual model for cultural competency, Brach et al. suggested health systems may better serve diverse populations and potentially lessen health disparities by utilizing culturally competent health promotion practices including interpreter services, health and care related training, recruitment and retention in health intervention programs/research, care coordination with health systems, and assistance with administrative or organizational accommodations. ²⁷ From these conceptions, the roles of CHWs seem particularly promising in community-level applications including outreach, education, and assistance as needed with access issues such as interpretation and care accommodation.

Thematic assessment of PPA-led interventions has identified common roles for PPAs in interventions including providing social support, targeting social norms, promoting self-efficacy, and providing personal advocacy. ²⁸ Moreover, the use of PPAs has been noted to have particular value operating within settings that health care workers and CHWs may find difficult to navigate, including working with homeless individuals, substance users, prisoners, and individuals with unique disabilities and conditions. ²⁸

There are numerous theories that support the importance of shared experience in enabling health advocates to encourage health-related behavior change. ²⁸ Dynamic social impact theory posits that the efficacy of a communicator to promote change is strengthened when the communicator is perceived as credible and relatable, and when the communicator is able to communicate promptly to the need for information. The theory of reasoned action contends that perceptions of social norms, especially people deemed important to the listener, are one of the strongest influential factors in behavior change. Simoni et al. contend that the processes by which PPA may affect behavior change mostly have to do with five focuses: “education, social support, social norms, self-efficacy, and patient advocacy.” ²⁸

In many of our own patient advocacy intervention studies targeting LCT engagement, we seek to raise participants’ self-efficacy to identify, learn about, and participate in clinical trials. Self-efficacy is considered a mediator of behavior change and social cognitive theory ²⁹ and assumes that self-efficacy may be developed during observational learning and persuasive social encounters. Mancini noted that peer persuasion while providing support helped improve patient self-efficacy and that exposure to similar individuals who succeeded in the targeted outcome was beneficial to patient recovery. ³⁰

Regarding empowerment theories, ³¹ the perceived powerlessness or lack of self-efficacy can affect perceived ineffectiveness in achieving particular outcomes. ³² Such beliefs may arise from perceived or tangible inequalities. Central mechanisms of empowering relationships have been noted as patient-centeredness, continuity, mutual acknowledgment, and important to patient advocacy-relatedness. ³³ With empowerment theory’s consideration of society factors, related perceptions, and connection with others, peers may be best positioned to help empower others to make personal changes to their health behaviors. By minimizing power differentials, peer-delivered advocacy may prove more sustainable at engaging patients in intervention, especially among patients from marginalized groups who may have reluctance due to expectations of discrimination. ²⁸

Applied to patient advocacy, these theories each suggest a positive association between the relatability of the advocate and the benefit of the interactions with the patient. However, there may be a trade-off in terms of what information is available to a peer versus a trained CHW. Below, we explore specific roles that have been explored with CHWs and PPAs in patient advocacy settings. While differences in efficacy between CHWs and PPAs have not yet been tested in specified roles, their roles/placement in prior research may help inform future research on the types of roles that should be tested. As their names suggest, it is possible that CHWs are best positioned for community-level screening and outreach, while PPAs are better positioned for providing one-on-one support, encouragement, and logistics.

Efficacy of Patient Advocacy

The benefits of using CHWs to conduct health outreach and education in the aim of reducing health- and treatment-related disparities are well established. CHWs have been successfully trained to help empower patients to address patient-level and system-level barriers to care. ³⁴ The use of CHWs has been shown to be beneficial in addressing a wide range of disparities including increasing clinical trial inclusion and retention of historically excluded minority groups, ³⁵ psychosocial and health outcomes related to human immunodeficiency virus, ¹² diabetes, ¹¹ hearing loss, ⁸ other chronic diseases, ⁹ and even assisting in pandemic responses. ¹⁰

Differences have been found between paid and volunteer CHWs, particularly in the types of roles and doses of contact provided. ³⁶ Paid CHWs may be more likely to have to oblige to the priorities and policies of the implementing organization, whereas volunteer CHWs may be more flexible in their approach. There is concern that this discrepancy may relate to community trust, in that, paid CHWs may be viewed as having higher allegiance to the implementing organizations than to the communities they are attempting to serve. ³⁶ Thus, it is possible that the use of PPAs could help alleviate potential trust concerns among patient groups who identify with similar health experiences.

While a rather new approach to patient care, the use of PPAs to help achieve health equity is being adopted across many fields of health. Similar to CHWs, PPAs are often selected from the same communities and backgrounds as the patients being addressed in the intervention and therefore can understand and address potential cultural differences, language barriers, and beliefs. However, PPAs have the shared experience of the targeted health concern or related treatments and thus are likely better at personally empathizing with and building stronger trust with patients even when being paid for the service. The confluence of these relatable qualities makes peer advocacy an exceptional choice for provisioners of health equity interventions.

A growing list of studies has assessed the efficacy of PPAs to impact patient behavior in regard to engaging treatment. Training PPAs to connect and educate patients has been beneficial in a multitude of treatment settings including, substance abuse, ⁷ clinical trials, ⁶ chronic disease, ⁹ and mental health. ⁷ Arguably, PPAs biggest strengths come from their personal experience and thus have been found particularly beneficial in helping patients identify necessary resources, services, and self-help aids. ³⁷ Because PPAs have experienced the targeted condition/illness and experienced seeking/receiving related treatment they can be valuable resources for both providers and other patients. As part of the care team, PPAs can help providers better empathize with the barriers to treatment their patients may face.

A qualitative review of the use of PPAs in addressing physical health issues through peer support recognized five particular strengths of PPAs: (1) provoking a sense of belonging to a community, (2) providing and synthesizing information, (3) supporting patients in decision-making, (4) empowering patients, and (5) assisting patients in self-managing their behavior. ³⁸ While there are many perceived benefits of using PPAs as patient advocates there may be concerns regarding the abilities of PPAs with serious health conditions to sustainably conduct advocacy. Furthermore, while expertise from personal experience is invaluable, PPAs may require additional training to understand how to best support the patient(s) they work with.

We briefly searched for studies that compared CHW- and PPA-led interventions to see if either was associated with better patient outcomes; however, we did not find any studies comparing CHWs and PPAs among equally designed interventions. We did find one study comparing a weekly in-person PPA-led intervention to a monthly CHW phone-based intervention, both similarly aimed at helping patients manage their diabetes. ³⁹ Both groups were associated with significant improvements in health management at 6 months and 12 months after program conclusion; however, the PPA-led group sustained these improvements through the 18-month follow-up while the CHW-led group did not. While this indicates a potential strength of PPAs over CHWs, unfortunately, the interventions were substantially different in frequency and intensity of support and thus the authors were limited in ascribing outcome differences to the type of patient advocate performing the advocacy. Even so, these findings suggest that more personalized and frequent contact may be beneficial for patient health outcomes.

Conclusion and Implications for Future Research

The apparent dearth of literature comparing the efficacy of CHWs and PPAs across similar roles highlights an unpaved road in health equity intervention research. It is important that future research compares the use of these two types of patient advocates in helping achieve health equity in patient engagement, treatment, and health outcomes. Because of differences in social distance, it seems likely that PPAs have strengths in providing more personalized and perhaps higher frequency support to address patient-level barriers to care, while CHWs may be more beneficial at reaching a higher number of people and relaying information about less personalized, system-level barriers to care. By studying which patient advocates have the most beneficial impact on patient behavior and health across a variety of roles and settings, health equity interventions will be better informed and hopefully more effective in achieving targeted results.