Similar values, different expectations: How do patients and providers view ‘health’ and perceive the healthcare experience?

Abstract Introduction No one can argue on the importance of health in one's life. However, the value of health in the context of other priorities for individuals is not always as clear. Further, patients' experience with the healthcare system is rarely contrasted with the service providers' expectations. The aim of this paper is to examine and compare patients' and providers' own definitions of health and their perceptions of the healthcare delivery experience from the lens of residents and providers in West Baltimore, Maryland. Methods This was a qualitative study with semi‐structured focus groups (15 sessions) and individual in‐depth interviews (21 interviews) with 94 participants. Two independent coders thematically analysed the transcripts. Results Patients identified five areas where health systems can help them stay healthy or become healthier: affordability and costs of care; accessibility; clinician/patient communication; addressing social determinants; and stigma and trust. Providers acknowledged that the healthcare experience is not always perfect. While the medical team focuses on conversations that enhance medical care, patients are expecting providers to touch on subjects beyond medical care. Conclusions Patients and providers need to consider that although they have a common value towards health, there is still a gap in what users expect and what providers can offer. To further align those expectations, there is a need for increasing involvement of patient in care administration and improving dialogue between the parties about these differences. Patient or Public Contribution A Stakeholder Advisory Board (SAB)—comprised of a patient, two community leaders, a physician and two healthcare administrators—was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members—Gail Graham, a patient consultant/professor, and Marcia Cort, a physician—are coauthors.

Patient or Public Contribution: A Stakeholder Advisory Board (SAB)-comprised of a patient, two community leaders, a physician and two healthcare administrators-was instrumental in codeveloping the study material (e.g., interview guides), engaging patients in the research process, identifying participants and codeveloping dissemination material. Two SAB members-Gail Graham, a patient consultant/professor, and Marcia Cort, a physician-are coauthors.
health values, patient engagement, patient experiences, patient-provider expectations, urban communities

| INTRODUCTION
For decades, the World Health Organization has defined health as the 'state of complete physical, mental and social wellbeing and not simply the absence of disease or infirmity'. 1 By defining health so broadly, there are three traits that are often considered when talking about health: (1) the lack of (physiological or psychological) illness, (2) the ability to handle the demands of daily life and (3) the balance between one's self, social dynamics and the physical environment. 2 Out of the three ways of describing health, the third descriptor is probably the most important as it emphasizes the factors that affect an individual's mental health, social standing, access to resources (including healthcare services) and ability to achieve the highest quality of life. Understanding these interrelated factors is instrumental in helping patients, physicians and policymakers create a health system that provides quality care.
As the importance and impact of quality of care have grown, many studies investigated how the intersection of the beliefs and values of patients and the perception of providers impact the healthcare system and the type of care provided. [3][4][5] This line of research has shown that there is often discordance between patients' health beliefs and values and providers' perception of the patients' health beliefs and values. 5 Provider and patient perceptions often lack concordance in terms of perceived physical and psychosocial health status and needs as well as the use of resources and support available for disease selfmanagement. [6][7][8][9][10] Research has also revealed that healthcare providers often diverge on perceptions of emotions, satisfaction and opinion of the quality of communication during a medical visit, quality of chronic illness care received by patients and perception of stressors while receiving care in the healthcare setting. [11][12][13] When patients' beliefs and values do not align with the providers' perceptions, patient experiences often suffer. These negative patient experiences are especially evident in the encounters of African American patients with the healthcare system. The African American patient experience is oftentimes underscored by feelings of mistrust towards medical providers. 14,15 Two notable occasions that have resulted in mistrust in the healthcare system are the Tuskegee Syphilis study and Henrietta Lacks. 16,17 Both of these instances demonstrate historical moments in which health systems discriminated against and took advantage of African American patients without their consent. 18 This feeling of unease remains a reality for many minority patients today, including African Americans. For instance, a recent systematic review of minority patient preferences, barriers and facilitators for shared decisionmaking with healthcare providers showed that African Americans were not being prepared for a discussion with their providers and were less comfortable in taking on an active role in their own health-related decisions. 19

| Conceptual framework: Learning health systems
The study, overall, and the interview guide were primarily based on the Learning Health System (LHS) Framework and its reflection in communities, through the novel Learning Health Care Community (LHCC) model. The LHS model framework has three foundational elements: health-related data generation, performance improvement targets and a supportive environment. 20

| Study objectives
As evidence has mounted to compare and contrast the perceptions of patients and providers, very little research has been done to contrast the experiences of patients within the healthcare system with the expectations of providers, particularly from the perspectives of those who are part of a minoritized population. The overall aim of our study was to gain community members' insight regarding how to make the LHS concept more community-focused and identify strategies that can address the needs of service users' and understand the gaps that exist between their experience and the perceptions of their providers. The objective of this paper, specifically, is to contribute to the health expectation literature and add to the knowledge regarding service users' experience with the healthcare system as compared to the perception of providers from the lens of residents and providers in West Baltimore, Maryland.

| Stakeholder Advisory Board
This study was designed and informed by community-based participatory research approaches with the goal of gathering and studying qualitative data to understand the differences in the perception of patients and healthcare professionals when it comes to patient-provider interactions. The first step in this process involved the assembly of a diverse, inclusive and representative Stakeholder Advisory Board (SAB). The SAB members were purposively chosen to reflect a diverse set of experiences and knowledge that can inform the study goals and board function. 24 With this in mind, we identified individuals and entity representatives who can serve on the board and provide appropriate guidance.
To facilitate group meetings, ensure efficiency and stay on budget, we decided to invite six members to join the SAB, with equal representation of patient/community advisors including three members and professional advisors (three members). All invited members were offered compensation for their time and agreed to serve on the SAB. The purpose of the SAB was to collaborate and lend their collective voice across the continuum of this project. The SAB members were instrumental in (a) codeveloping study material (e.g., interview guides), (b) brainstorming how to actively engage patients in the research process, (c) offering guidance on implementation and timing to ensure that the research process makes sense to patients, (d) assuring that the language used is culturally appropriate, (e) helping identify and recruit participants representative of the target population, (f) codeveloping scientific and lay publications to disseminate findings and (g) advising on media forms and outlets for dissemination.

| Data collection
Focus group sessions and in-depth interviews were conducted to hear directly from patients, community members, healthcare professionals and administrators and other stakeholders regarding their views on the concept of health and healthcare experiences.

| Interview guides
Following an iterative process, the investigators, along with the SAB, codeveloped a semi-structured interview guide (see Documents S1 and S2) to identify themes and questions that would increase understanding of patients' and healthcare professionals' viewpoints on health and healthcare, their experiences with the healthcare system and patient-provider interaction. A scoping search of the literature (focused on the concepts of LHS and LHCC) identified a roster of themes and questions that can potentially be included in the interview guide. This roster of themes and questions was then shared with the SAB members, who collectively identified the top concepts to be addressed and the questions to be asked under each section.
Based on the recommendation of the SAB-particularly the patient and community representatives-the term 'doctor(s)' was used to refer to healthcare professionals in the interview guide. The rationale for the use of this terminology is that the many community members think of 'doctors' as the providers of care (even if, for instance, they were physician assistants or nurses, etc.) and that they would be more familiar (and responsive) with the term 'doctor' than the term 'healthcare provider' or 'healthcare professional'. Two separate versions of the guide were developed with some slight modification in the question framing: one addressing patients and community members and the other addressing healthcare professionals. The interview guide was pilot-tested with a group of 15 participants, one focus group and five interviews, to refine questions to meet our needs.

| Recruitment and participants
The investigators used purposive sampling to identify and recruit participants who could provide comprehensive insight into our research questions, with support from SAB members, various key partners and grassroots on-ground outreach efforts (e.g., snow-ball recruitment techniques, flyers distributed in community resource centres, at health fairs and other community outreach events).
Participants' demographics were collected using a separate survey administered before the interview or focus group sessions to assess and ensure diversity of participants in terms of age, gender, race, educational attainment, self-rated health and health coverage.
Recruitment of participants continued until we reached saturation in themes within respective stakeholder groups. A total of 94 participants participated in 16 in-depth interviews and 15 focus groups between June and September 2018.

| Focus group and interview process
The focus group sessions and in-depth interviews were moderated by researchers trained in qualitative methodology and were conducted in private spaces and lasted for approximately 60-90 min. Each session began with the participants receiving information on the project and being informed that their participation was voluntary and that they were free to leave or decline to answer a question at any time. With their consent, each of the discussions was audio recorded to supplement the field notes. The audio-recorded interviews were transcribed by a professional transcription service. We also compensated each participant with a $25 gift card for their time.

| Coding process and analysis
A two-step coding process was followed to analyse the data in concordance with similar qualitative approaches. 23,25,26 The first step was inductive, where two coders independently read each transcript to identify emerging themes, followed by a group meeting to discuss extracted themes, identify broad categories and refine them into headings that matched the original concepts outlined in the interview guides. 27,28 Under each category, major themes and sub-themes were identified and presented in a codebook that was used for the second step. The second step was deductive, where an inductively developed template/scheme was applied to re-code all the data in a uniform fashion and extract quotes related to each of the themes identified in the first step. Each quote was then reviewed independently by a different coder to confirm thematic relevancy.
Differences were reconciled in a group meeting until a consensus was reached.
The reliability of the data collection and analysis was assessed using Lincoln and Guba's 29 criteria. Credibility was verified by a member-checking procedure, where identified themes were shared with a random sample of participants (15%) to assess whether our data interpretation and emerging themes are an accurate representation of their experiences. 30 Transferability was achieved by sharing the methodology, quotes and detailed descriptions of the context in all disseminated material. For dependability, we asked the SAB members to examine both the process and the product of the research study and evaluate the findings, interpretations and conclusions. Lastly, confirmability was realized by analyst triangulation, with multiple analysts being involved in the data collection, coding, analysis and review of findings.
A summary of the results was shared with participants who opted to receive study findings/summary at the conclusion of the study. The study was approved by the Institutional Review Board at the University of Maryland, Baltimore, and followed the consolidated criteria for reporting qualitative research (COREQ) guidelines. 31

| RESULTS
A total of 94 participants participated in 16 in-depth interviews and 15 focus groups. Thirty-nine participants (41%) self-identified their primary role on the interview as community member/resident, community leader or employer, twenty-four (26%) self-identified as patient, patient advocate or caregivers and thirty (32%) selfidentified as healthcare professionals, healthcare administrators, healthcare payers/insurers, health services researchers or health profession students. One participant chose not to disclose their primary stakeholder role. For the purposes of the demographics and qualitative analysis, the first two stakeholder roles (community members/leaders and patients/caregivers) were collapsed together and labelled as 'service users'. It is noteworthy that when discussing patient experiences, we believe that it is important to use terminology that allows us to be inclusive of community members and leaders, patients and patients advocates who utilize healthcare services. To this end, and for the purposes of this paper, we use 'patients' and 'service users' interchangeably, with the understanding that community members and leaders also use healthcare services and interact with healthcare professionals.
Slightly less than half of the participants (45%) were between the ages of 45 and 64 years, and the majority (82%) self-identified as Black or African American. The majority of healthcare professionals (70%) had more than 4-year college degree, while the service users had a normal distribution of educational attainment. Further, almost two-thirds of the healthcare professionals (63%) rated their health as very good or excellent, while only two-fifth of the service users (40%) did so ( Table 1) When addressing health as a priority, one needs to understand the distinction between younger and older populations. For instance, younger participants (e.g., students) did not place health as high on their list because they felt they are young and healthy so they do not have to actively think of it and prioritize it. Among students, for example, their education may be their priority at that stage of their life and career.
Another important distinction is between theory and practice. A couple of participants (namely healthcare professionals) clarified that as healthcare professionals, they realize the importance of health and that it needs to be their priority in life. However, in practice, they believe that other life necessities come into play (e.g., work-life balance, finances, enjoying life, spirituality or religion, etc.).
Different participants had different motivations to stay healthy or become healthier. The top two motivators were 'living longer'-driven by the need to feel well and prevent future longterm illness-and 'family'-driven by the urge to stay around for family members and see their kids and grandkids grow up.
Participants stated that they were motivated by their desire to be present for their family and wanting to set a good example for those around them. One participant stated that, 'sometimes, I want to give up… I want to do it, but then you think, "I have kids, grandkids.
They need me and love me, and I got to keep fighting". So, I just keep fighting…' Some also voiced a fear of not being healthy due to the experiences that they have seen of loved ones, community members, on advertisements and in hospitals/clinics. Other motivators included spirituality (e.g., God or religion), witnessing examples (e.g., healthy role models to follow, or sick individuals to avoid following), self-worth (e.g., self-motivation, self-love, self-care) and upbringing (e.g., raised to seek good health).
When asked to identify how they reward themselves for selecting healthy choices, participants identified two main subthemes: first, self-reward, by doing enjoyable activities (e.g., getting hair done) or treating oneself (e.g., burgers, a romantic dinner, cookies, smoothies, cheat day), and second, self-encouragement or self-satisfaction, by being rewarded through the good outcomes that faith-based organizations (e.g., churches) and educators who make the information easy to understand. On this note, few participants mentioned the information overload that they receive sometimes, exemplified through often-conflicting information (e.g., opposing study results) or inability to discern the reliability of information.  were the most memorable and impactful. According to participants, building this rapport encouraged them to be more vocal about the health issues that they were facing.
Even though a few participants shared great experiences that they had with the healthcare system, most of the service users recalled bad experiences. In the unpleasant experiences that were shared, service users expressed feeling rushed by the physician and not being seen as an individual. When describing these instances, service users stated that doctors did not take the time necessary to build a relationship with the patient and they did not ask 'How are you?' The majority vocalized that this demonstrated a lack of compassion. It was also stated that oftentimes, providers underestimated the patients' ability and knowledge about their health conditions/experiences. In discussing these occurrences, some patients stated 'I don't like arrogant [providers] who walk into a situation and assume they know what's best for me.
[Providers] can't always know what's best for me without at least having a conversation'. These bad experiences can also be categorized on the basis of the lack of staff available at the doctor's office (Table 2).
When asked what providers and healthcare systems can do to improve the healthcare experience, service users stated that doctors could ask how the patient is doing. In addition to this, they stated that doctors could also ask them about the social determinants of health. This includes questions about their mental health and trauma, their family, financial burdens and social support.
One patient emphasized the importance of such dialogue by stating,

Healthcare professionals
Affordable 'Sometimes people aren't compliant because they can't afford it. We look to help them with programs that can offer patient assistance or educating them on how to use it appropriately so that it's easier for them'.

Access
'What their barriers are to accessing health care'. your list. Eating and having shelter would be at the top of the list'.
In addition to the social determinants of health, service users also voiced a desire for providers to meet them where they are and ensure that they understand the information that was discussed during the visit (Table 3).

| Service providers' experiences
On asking service providers to describe their great experience with a patient, most of the interactions described were ones in which they had built relationships with their patients.   [34][35][36][37][38][39][40][41][42] If patients are getting help on all of the social factors that cause them to place health at a lower priority, they will be able to achieve better health outcomes. 43,44 Lastly, our research demonstrated that physicians often focus on the good experiences that they have had with patients rather NATAFGI ET AL.
| 1525 than the bad. Those good interactions are often defined by the provider assisting the service users with understanding their medication and their health condition. Providers expressed that these interactions allowed them to build relationships and empower patients to take control of their health. This finding supports the conclusion that providers perceive education as the key to gaining patient compliance with medication and increasing their trust of the medical system. 5 Even though the providers' descriptions of healthcare experiences support previous research findings, it also emphasizes the disconnect between service users' and providers' expectations.
The findings from this study may be limited in its representation of different social identities (race, medical specialty, medical background, etc.) or individuals without health insurance coverage.
Furthermore, this study might only be generalizable to other urban populations with similar demographics to Baltimore, Maryland. While this limitation impacts the ability to generalize to other settings or social identities, qualitative research is usually focused on in-depth conversations and theme generation rather than generalizable findings. Despite this limitation, this study provides a unique perspective on service users' expectations versus the providers that they interact with. In particular, this study provides a unique strength in identifying the perspectives of both healthcare professionals and service users on healthcare factors that are most important for both groups and issues that are yet to be aligned.

| CONCLUSION
When accessing healthcare quality, it is important for a health system to look beyond the effectiveness of their internal processes, the bad versus good outcomes of procedures and timeliness of care. Systems