Introduction

The healthcare industry, worth $8.45 trillion globally in 2018, sits as one of the fastest growing industries (Stasha, 2021). In the United States alone, 784,626 companies make up the healthcare sector (Stasha, 2021). Situated within the burgeoning institution that medicine has become, patients seek care for their highly personalized and unique scenarios, each guided by a different experience, preferences, values, and personal approaches to their health. However, even the terminology used in the medical institution relays to its citizens that they are far from active participants in their treatment plans: physicians are named “providers” and patients merely “receive” care. This paternalistic structure is coupled with a distinct decrease in citizen trust of the institution: from 60% in 1974 to only 34% in 2016. Armed with years of education and residencies, medical providers hold a wealth of technical expertise regarding human bodies. However, patients too possess an expertise that the other party cannot: their intimate knowledge of their values and preferences. In what has become an emerging area of focus in the medical community, patient-centered care seeks to re-focus healthcare towards patient empowerment and autonomy by actively engaging them as a participant in the medical visit. Shared decision-making, a model of citizen participation, falls under this umbrella and has been heavily advocated for in recent years, from the World Health Organization’s Declaration of Alma Ata (1978) to the Affordable Care Act (2010).

Within this paper, I will examine shared decision-making (SDM) as a model of citizen participation in the highly profitable and exclusive institution of medicine. I will begin by examining the theoretical frameworks that will guide my analysis of SDM as a citizen participation model. SDM hinges on power-sharing (Arnstein, 1969), reinvigorating the gap between the citizen and institution (Gaventa, 2001), dynamic deliberation as a practice of democracy (Heller and Rao, 2015; Silver et al., 2010), and distinguishing personal troubles from societal issues (Mills, 1958).

I will then examine the current state of the physician-patient relationship, as well as the distinct power imbalance it carries, as the core of the medical institution. I will discuss clinical trust as foundational to this relationship, acknowledging the historical and continued trend of discrimination and negligence of the medical institution against marginalized communities, and the opportunity for clinical trust to be re-introduced within a participatory physician-patient relationship. Finally, I will outline the benefits of incorporating citizen participation in healthcare that extend beyond the visit, such as fostering increased accountability for institutions and physicians to tailor their care to the specific community they serve.

With my analysis, I argue that while shared decision-making holds promise to reintroduce democratic processes into a historically inequitable and paternalistic institution, careful implementation and results-oriented research will be needed in order to avoid the continuation of an already existent perception-reality gap of implementation in this highly private participation arena. In conclusion, I argue that while shared decision-making is a crucial first step to seed equitable healthcare practices going into the future, it will be critical to take transparent steps towards its implementation that avoid the over-romanticization of patient participation.

Theoretical Frameworks for Citizen Participation

Levels and Definitions of Citizen Participation

Citizen participation has been studied extensively across fields, countries, and government structures, and yet, the question frequently arises of what amounts to “participation”. In what is now a central and classic piece in citizen participation literature, Arnstein (1969) presents a framework for conceptualizing and labelling the degrees of participation that can be loosely applied to example citizen participation models around the world. The framework is organized into a ladder with eight levels of participation, grouped into non-participation, tokenism, and citizen power (Arnstein 1969). With the ascension up the ladder, the “participation” in question involves an increasing redistribution of power. Arnstein (1969) argues that in the absence of participation fostering a new balance of power between citizens and the state or institution, citizen participation is in danger of working to merely maintain the status quo. Arnstein thus centers their definition of citizen participation on this redistribution of power, emphasizing that citizen participation enables marginalized groups to access the power of the dominant group and take an active role in setting the processes in which they live, whether allocating resources or information (Arnstein 1969).

In “Towards Participatory Local Governance,” Gaventa (2001) expands upon Arnstein’s understanding of the definition of citizen participation and its role in redistributing decision-making influence and power. Gaventa argues that while citizen participation can reinvigorate the relationship between the citizen and the state when both parties take part in the process, it can still be exclusionary (Gaventa, 2001). In an introduction to a symposium of the International Journal of Urban and Regional Research on Participation, Silver et al. (2010) point out that social inclusion necessary as a prerequisite for the assumption of a citizen participation model and call for an increasingly dynamic view on citizen participation as a process that is actively practiced rather than a rigid and transferable model, as a singular model of citizen participation does not amount to a formula applicable to every context (Hellen and Rao 2015).

Deliberation as Central to Citizen Participation

Deliberation, the process through which decisions are reached based on the weighing of individuals’ values and preferences, lies at the heart of the democratic process of citizen participation. Heller and Rao (2015) frame deliberation as a practice of democracy which hinges on the assertiveness of citizens in being owners of the political process. Beyond being a citizen, deliberation is the engagement in the practice of citizenship, but the status and practice are often not distinguished (Hellen and Rao 2015). Silver et al. (2010) take on the concept of deliberation, or consensus, alongside conflict, arguing that they are not mutually exclusive, and their dynamic coexistence can actually create a more complete understanding of citizen participation as a process. Prior to the symposium from which this paper arose, many practitioners held the thought that deliberation and conflict were indeed mutually exclusive (Silver et al., 2010). Silver et al. (2010) go further to present a need for a specific context for participation to take place in order to shape the democratic process, as well as for there to be a focus on the distributive outcomes of the participation.

Distinguishing Between Personal Troubles and Societal Issues

In this paper, I will draw on Mills (1958) to assess how citizen participation can give light to societal issues through the contextualization of personal troubles. Mills’ (1958) concept of the sociological imagination operates as a lens through which one’s perspective can expand beyond the personal experience of a singular individual and see it in a broader landscape of social and historical context. Coontz (1997) uses the sociological imagination in this way to distinguish between personal troubles and societal issues, highlighting structural problems in society that are behind individual tensions and struggles. Rather than blaming the individual for a shortcoming, the responsibility is then placed on the structure that enabled it.

Social Exclusion and the Widening Gap Between People and Institutions

The Coronavirus pandemic has further revealed that public problems disproportionately burden marginalized groups while benefiting dominant groups or a powerful minority (Oxfam America 2020). Within the six propositions on citizen participation, Gaventa (2001) documents the growing gap between citizens and institutions that harbors an increasing amount of mistrust. The distance in this relationship is only further cemented by medical racism and institutional histories of discrimination against minority and disenfranchised groups as well as current disproportionately high levels of malpractice against patients of color (Goleman, 2019). In this context, there is a growing need for a responsive government and proactive citizens, as civic participation in public institutions is capable of seeding more equitable systems (Gaventa 2001). Gaventa (2001) argues that this gap can be closed with successful participatory democracy, while introducing the question of how to assess when participation conditions are genuine democracy building efforts.  Without asking this question, a danger lies in over-romanticizing participation (Silver et al 2010). Silver et al (2010) call for an increased focus on the distributive outcomes of citizen participation models, with a close analysis on who is benefitting from them, in order to avoid those in power using the process to merely reproduce their own.

Shared Decision-Making as a Model of Citizen Participation

The Patient-Physician Relationship

The patient-physician relationship is a complex model of a relationship steeped in a distinctly unequal power dynamic (Edwards and Elwyn 2009). Health care communication is unique in that it frequently occurs in the context of a non-voluntary, necessary, or even dire situation that requires empathetic listening and careful decision making (Edwards and Elwyn 2009). Roter and Hall (1992) present four types of patient-physician  relationships, including paternalism, consumerism, default, and mutuality, where paternalism exacerbates the power dynamic and holds passive patients and dominant physicians, and mutuality centers on shared decision-making and a division of labor (Brock 1991). In the last few decades, paternalism has fallen out of favor and mutuality has enjoyed increased policy support and is upheld as the ideal model (Edwards and Elwyn 2009). Central to mutuality are the concepts of clinical trust and patients taking an active participatory role in the medical decision making.

Clinical Trust

The establishment of trust is a demonstrated prerequisite to effective medical care services (Choy and Ismail 2017). However, trust in medical institutions has been steadily decreasing in the United States. Data from a recent General Social Survey depicts a decline in confidence in medical institution leadership from 60% in 1974 to only 34% in 2016, making it the most extreme decline in confidence of any institution during the timespan (Baron 2019). Entering into the patient-physician relationship, patients become the vulnerable party as they disclose personal information and look to the competence of a physician to alleviate their suffering (Choy and Ismail 2017). Mistrust in patient-physician relationships has most often been associated with medical negligence, patient complaints, or lawsuits (Choy and Ismail 2017; Goleman, 2019).

Research around the impact of fostering a trusting clinical relationship has been emerging more rapidly in recent years as medical institutions take a heightened interest in the intersection between trust and health outcomes (Choy and Ismail 2017). The mass of literature demonstrates this increased interest, with United States-based research on the subject making up almost half of the work published internationally in the early 2000s (Brennan et al 2013). Clinical trust is becoming understood as central to the effective communication, exchange of knowledge, and development of a bond between parties, thus fostering positive health outcomes (Choy and Ismail 2017). Ultimately, understanding the scope of trust in patient-physician relationships is crucial to understanding the state of healthcare quality and guiding public policy (Choy and Ismail 2017).

Shared Decision-Making as a Model of Citizen Participation

In recent years, patient participation in healthcare, both on a public policy level and private level, have come to be understood as central to building a sustainable and equitable healthcare system (Williamson 2014). The World Health Organization first promoted patient participation in healthcare in the 1978 Declaration of Alma-Ata, stating that “people have the right and duty to participate individually and collectively in the planning and implementation of their healthcare” (WHO 1978). The sentiment was reiterated in Section 5604 of the Affordable Care Act (Patient Protection and Affordable Care Act 2010). This participation encompasses both involvement as the public in the planning and distribution of healthcare resources and quality, or holding the healthcare industry accountable for providing equitable and evidence-based care of the population they serve, as well as involvement as a patient in a direct partnership with a provider in their individual treatment and care plan (Florin and Dixon 2004).

In addition to fostering accountability, the introduction of a participatory process is crucial to upholding a commitment to a democratic process (Williamson 2014). On the private side of patient-centered healthcare, “private participation” entails refocusing medicine around the patient and centralizing their values and preferences to guide the practice and emphasize autonomy and empowerment (Williamson 2014; Edwards and Elwyn 2009). Shared decision-making, in its ideal form, falls under Roter and Hall’s (1992) “mutuality” and is an approach that maintains a balance of power. In practice, the mutualistic approach has been deemed successful if the agenda of the visit is negotiated between parties, the patient’s values and preferences are explored, and the physician takes on an advisory role instead of that of a guardian or all-knowing force (Edwards and Elwyn 2009). A common definition of shared decision-making is from Charles et al (1997) and hinges on the involvement of both parties, transparency of information sharing, building consensus around treatment, and finally, reaching a mutual agreement as far as treatment. The challenge lies in turning this ideal mutualistic relationship into practice. Edwards and Elwyn (2009) argue that full mutuality is hard to achieved in practice and in order to be possible, there is a distinct need to more thoroughly re-analyze the root issues and influences behind the need for shared decision-making in healthcare.

Initial Research into the Benefits of Shared Decision-Making:

While there is a distinct lack of results-oriented research, promoting patient autonomy and shared decision-making has been preliminarily associated with positive health outcomes (Crawford et al., 2002; Stewart et al., 2000). In an observational cohort study, Stewart et al (2000) found that patient-centered communication yielded patients who were more likely to relay finding common ground with the physician. Additionally, patient’s positive perceptions of the visit were then associated with improved long-term health outcomes and more efficient care, as they experienced a better recovery, better emotional health two months following the visit, and fewer referrals or advanced tests (Stewart et al. 2000). Central thus to a positive perception is patients feeling as though they are a full participant in their visit (Stewart et al. 2000). Autonomy allowed by complete participation fosters a sense of partnership in the medical decision-making process and serves as a strong trust-determinant in the patient-physician relationship (Stewart et al 2000).

Further, shared decision-making is a mode of patient-centered care that requires a physician to look at the whole individual (Williamson 2014). In turn, this allows for the emergence of a social context to arise, giving insight into the broader scope of medicine and health outcomes (Williamson 2014). It contextualizes the patient and their personal issues into a broader landscape of the social and structural drivers and influences at play behind their health status and puts responsibility on citizens, patients, policymakers, and healthcare teams to address these structural and population problems.

Transitioning from Theory to Practice

The widening gap between the individual and the medical institution

Shared decision-making (SDM) provides an example of a model of citizen participation that seeks to bring accountability and equity to an institution that both has a history of mistrust and has grown farther away from the needs of the individuals and communities it supposedly serves. Shared-decision making is an expression of patient-centered care that places the patient in a central role in their own treatment plan, thus putting citizen participation into practice in the medical field to ultimately bridge this gap by sharing the medical decision-making burden and fostering increased trust. The medical decision-making that occurs in an individual’s visit and can hold incredible weight on their life and health outcomes is a singular piece of the massive institution that is medicine. Thus, not only are patient visits characterized by a highly unequal power balance, they are situated within a wider institution that is growing increasingly distant from individuals.

The growing mistrust that is harbored in the widening gap between people and institutions, as detailed by Gaventa (2001), can be applied to understand the existence of mistrust in the physician-patient relationship as the foundation of an individual’s relationship with the medical institution as a whole. As the gap between institutions and individuals widens, large institutions are those especially in need of citizen participation due to a lack of accountability inherent to their size and power. With the onset of the pandemic as a public health crisis, several health institutions, including CVS Health, Johnson and Johnson, and UnitedHealth, have profited immensely, highlighting the disconnect between individual health and the highly profitable institution itself (Oxfam America, 2020). Citizen participation calls for a distinct reorganization of the division of labor that aligns with the reinvigoration of action on both sides of the institution-individual relationship in question (Brock, 1991; Gaventa, 2011). In the case of shared decision-making, this requires inverting the traditional paternalistic structure of the privately-held patient visit and instead, a reinvigorating of input and energy into the process from both the patient and the physician (as a representative of the institution) in order to counter the traditional model and fight its reproduction.

Shared Decision-Making in Practice: Practicing Democracy in Medical Visits

In practice, shared decision-making heavily draws off of the theoretical concepts of deliberation that are discussed by Hellen and Rao (2015) and Silver, Scott & Kazepov (2010). In the process of shared decision-making, deliberation looks like sharing information, both parties taking active steps towards consensus, and finally, settling on an agreement about which treatment to pursue. Effective deliberation here, in which both parties are seen and heard, requires the disbandment of power dynamics and paternalism in favor of a transparent relationship in which the patient brings preferences to the deliberation and the physician brings technical expertise and together, a treatment plan is reached. For this reason, Silver et al. ‘s (2010) concept of including both exclusive and selective participatory structures is pertinent here, as each participant in the shared decision-making process, the patient and physician, bring distinct areas of expertise to the visit. The value of this method of citizen participation is rooted in creating space for an empowered and autonomous patient such that their preferences about their body are valued as important and valid, on par with the technical expertise held by the medical professional. For this reason, this process has been called “values clarification” (Llewellyn-Thomas, 2009), and the resulting relationship can foster a multidimensional and beneficial partnership.

With the recent push for patient-centered health practices (Patient Protection and Affordable Care Act, 2010), shared decision-making is only in the initial phases of being implemented into the medical institution. For this reason in part, there is a distinct lack of research on the long-term outcomes. The current and past literature on shared decision-making that is available is lacking in results-orientation: for example, in a 2002 review of 300 papers discussing shared-decision making cases, only 12% were found to describe the direct effects of the patient-involvement initiatives (Crawford et al., 2002). Specifically, the effects of the initiatives on care accessibility and patient health outcomes were not examined (Crawford et al., 2002). Crawford et al. (2002) argue that the lack of outcomes data presentation may be due to that the implementation of patient participation is seen as an end, or democratic requirement, rather than a means to improving patient health in the future in a quantifiable way. While SDM is still presented as an ideal ethical requirement to re-introduce democracy into the institution, rather than an active practice with a short feedback loop of direct impacts on the patient participant, the capacity for long-term outcomes research, and thus true institutional transparency and reform, will be limited.

The existent preliminary research demonstrates positive associations between SDM implementation and patient health. Through a results-oriented observational cohort study of 39 physicians and 315 patients, it was found that the practice of engaging in patient-centered communication was associated with patients’ perceptions that they had effectively found common ground in the patient visit (Stewart et al., 2000). As such, this demonstrates that effective and power-sharing deliberation in the patient visit was correlated with positive patient perceptions of their visit as a whole. Additionally, multiple positive health outcomes extended from these positive perceptions of the visit, such as better recovery, improved emotional health, and fewer future diagnostic tests or referrals. While future research is needed, this case study points to shared decision-making providing care that both improves health outcomes and is more efficient by keeping patients out of the hospital in the future (Stewart et al., 2000). Further research is however needed on the time-intensivity of incorporating patient-centered care, in order to understand to what extent it disrupts the clinic workflow (Stigglebout, 2012). In a paper that originated in the debates that occurred at the Sixth International Shared-Decision Making Conference in the Netherlands in 2011, Stiggelbout et al. (2012) argue that shared decision-making supports risk-management and avoiding harm, as patients have been shown to be more conservative in which elective procedures they would like to take on, which then leads to overall better health outcomes. While the long-term effects of patient-centered care are complex to dissect (Crawford et al., 2002), there is a crucial need for future results-oriented research and continued observational studies. Crawford et al. (2002) suggest that outcome measures included in future evaluations will help shape effective approaches for implementation and further persuade providers to incorporate patient-centered care.

Outcomes Beyond the Patient Visit

While understanding the direct outcomes on the patient participant requires an invigoration of future research, inserting shared decision-making into healthcare also holds promise beyond the visit itself. While patient participation in the medical institution aims to create a more empowered and balanced physician-patient relationship, it also holds the potential to heighten the institution’s social accountability as it brings social context and population health issues into the visit. The concept of the sociological imagination (Mills, 1958) is helpful in understanding the implications of bringing social context, from the levels of the history of the institution of medicine to population health and individual preferences, into the patient visit. Shared decision-making calls for person-centered care that hinges on viewing the patient as a whole individual whose case is in part the product of their situation, thus distinguishing personal troubles from societal issues (Mills, 1958). This approach consequently fights against the damaging narrative of blaming the patient and rather, takes into account the systematic and overlapping injustices and conditions that have laid the groundwork for their health. Re-focusing medicine around the individual as a whole person rather than a cog in the machine of the healthcare institution requires the identification of, and reckoning with, larger drivers of population health.

Implementing Power-Sharing in Shared Decision-Making

Shared decision-making involves patients directly as proactive citizens in a democracy building effort. Of the types of patient-physician relationships defined by Roter and Hall (1992), mutuality, which in its ideal form is characterized by clinical trust and a patient’s active role, most closely fits the “citizen power” group of Arnstein’s (1969) ladder as it involves a redistribution of power. As shared decision-making occurs behind closed doors, there is a danger in the participatory process being loosely encouraged in a medical institution but not taken on or taken on in practice as a form of tokenism or an appeasement to social pressure. Mere encouragement of the practice on ethical grounds in no way guarantees its implementation. Because this expression of citizen participation occurs in a private and confidential sphere, the level and success of power-sharing in the participatory process closely depends on both the determination of the physician in taking on the practice as well as systemic methods of implementation and accountability. Here, the discussion by Silver, Scott & Kazepov (2010) is necessary in order to understand that citizen participation processes are exactly that, processes, and they must be embarked on then with a dedication to continued learning, reassessments, and evaluation within their implementation. Following from this, establishing clear policies that support mutualistic shared decision-making practices in medicine must also be personalized to the community of patients that are implicated within the new policies, as citizen participation models cannot be copied from context to context but must rather be modelled around the community that they are intending to support and serve (Hellen and Rao 2015). With the effective implementation of a shared decision-making process, the providers become held increasingly responsible to tailor their style of care to the specific communities that they serve.

Lessons for Ongoing and Future Implementation

Embedding this nebulous concept of shared-decision making into the private sphere of medical visits is a current and active source of research. Many physicians already feel as though they use shared decision-making, but research demonstrates a clear perception-reality gap (Stiggelbout et al., 2012). This gap emphasizes the need for careful, transparent, and outcomes-oriented implementation. Because the model is both nebulous in how it emerges within the relationship and because it is embedded in a private sphere that is shrouded in privacy concerns, distinct structure will be necessary for the model to usher change to the institution and foster citizen trust. A case study of community ownership of health clinics in Bangladesh, designed as a reform to make the health system more responsive to its citizens, provides an example of how participation in healthcare, as a traditionally paternalistic institution, requires specific resources and spaces to be effective (Mahmud, 2009). In this case, the incorporation of participation had a negligible positive impact because of a lack of structure and direct benefit to participants’ livelihoods, many of whom were not even aware of their participation (Mahmud, 2009). Simply creating these spaces and models, especially within an institution in which it has been deeply ingrained that physicians are the “providers” and patients are the “receivers” of care, and thus is not characterized by citizen participation, is not sufficient for the democratic processes to proceed as specified by the participation model (Mahmud, 2009).

People do not expect to be active and power-sharing participants within the historically paternalistic medical institution. While a model of “invitive” participation, this Bangladesh case study provides valuable insight and lessons for future implementation of citizen participation into healthcare. Within the implementation of shared-decision making on a wide scale, it will then be pertinent to make patients transparently informed of their own participation in the process, thus extending to them more control and knowledge of their position within the new power-sharing structure. Effective “values clarification” here (Llewellyn-Thomas, 2009), that demonstrates to the patient that their participation made a tangible impact in the course and determination of their treatment plan, then has the potential to spur future motivation for patients to seek medical assistance and further engage in their own health plan.

Ultimately, the goal is for the shared decision-making model to make up the core of best clinical practice guidelines (Stiggelbout, 2012). Gradually, best practices around this model are already being developed in the medical community (Stiggelbout et al., 2012) that provide more tangible guidelines for implementation. Both the United States and Canada are among the countries that have used interventions to promote shared decision-making, such as using pamphlets and web-based tools to disseminate information with their options, which has been found to be more effective if conducted in person (Stiggelbout et al., 2012). Further, The Center for Shared Decision Making at Dartmouth Hitchcock Medical Center in the United States has developed a training service for both patients and providers (Stiggelbout et al., 2012). Stiggelbout et al. (2012) go on to suggest postgraduate training and accreditation to include shared decision-making education. Thus, continued education and transparency on both sides of the physician-patient relationship will be vital to closing the perception-reality gap and ensuring careful implementation in which the model has the space and resources to take form.

Conclusion

While the implication of altering the course of treatment plans in every visit room across medical institutions is dizzying indeed, it is clear that concrete steps must be taken to insert democratic processes back into the institution of medicine. There is a critical, and especially timely, need to reshape the foundation of the institution to be held more accountable for the communities they supposedly serve.

Built on a historical foundation of inequity, negligence, and mistreatment especially against marginalized communities, citizen trust in the medical institution has been sharply declining in recent years. Situated at the core of this institution is the physician-patient relationship, which too is defined by an inherently unequal power dynamic in the traditionally paternalistic structure. As a power-sharing model of transparent communication and patient participation, shared decision-making aims to subvert this structure towards mutualism, in which both physicians’ technical expertise and patients’ preferential and experiential expertise are valued and considered towards the formation of a treatment plan. While results-oriented research is not yet widespread, the practice holds preliminary implications for both improving patient outcomes and fostering increasing institutional accountability and awareness around the social drivers of population health.

In the coming wave of the implementation of shared decision-making, it will be especially important to avoid over-romanticizing participation, as the mere encouragement of the adoption of a shared decision-making process, such as what occurred in the Affordable Care Act, in no way guarantees its practical implementation in each physician-patient relationship and is only a preliminary step towards this goal. Overcoming this gap requires restructuring the institution from the ground up and widespread transparency regarding the adoption of patient-centered care such that patients are aware of their participation and autonomy. In its ideal future form, shared decision-making would be at the core of standard clinical practice such that instead of disrupting the clinical workflow, the workflow builds on the participatory and values-clarification model. Careful and transparent implementation of shared decision-making into healthcare is a crucial first step towards building back trust and a more equitable institution, starting with each individual relationship and case.

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