The Complex Interplay of Communication and Trust in Healthcare Delivery

By Sankirtana Danner, Salma Saavedra, Fallon Flowers, Alema Jackson, Janell Ross, Hiba Abbas, Elizabeth Adetoro, Abbey Ekong, Cassandra Osei, Nicolás Francone, Jonathan Alhalel, Lisa Masinter, Danielle Lazar, Melissa Simon

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Danner S, Saavedra, Flowers F, Jackson A, Ross J, Abbas H, Adetoro E, Ekong A, Osei C, Francone N, Alhalel J, Masinter L, Lazar D, Simon M. The complex interplay of communication and trust in healthcare delivery HPHR. 2021;39. DOI: 10.54111/0001/MM5

The Complex Interplay of Communication and Trust in Healthcare Delivery

Abstract

Effective communication in clinician-patient relationships is an essential part of improving health outcomes. Ineffective communication in clinical settings leaves patients feeling undervalued and unheard. Breakdowns in communication can have particularly profound effects on minority or underserved populations, where health disparities already exist. Effective communication is critical for establishing trust, which allows individuals to feel they can share their concerns and questions. Distrust is a particularly important issue in maternal health, where current US rates of maternal mortality and morbidity are 3.1 times higher in Black and African American (AA) pregnant and birthing persons than their non-Hispanic white counterparts. To address the widespread issue of medical distrust and its connection with maternal health outcomes, the OPTIMIZE study is currently implementing an innovative intervention aimed at improving perinatal care for Black/AA pregnant persons. This intervention prompts clinician-patient conversations to enhance communication and repair trust, including a focus on patients’ goals, concerns, social determinants of health, and safety. The implications of this intervention are broad, including the potential to improve trust and communication in other clinical specialties.

Introduction

Effective communication is a common struggle in many relationships, including those between clinical care teams and patients. Health communication is so critical to patient outcomes that Healthy People 2030 focuses on improvements in this area.1 Ineffective communication during medical visits, including not listening to patients or not providing clear instructions, can leave patients feeling unheard and unlikely to adhere to recommendations.2 Breakdowns in communication can have profound effects on minority or underserved populations, where health disparities already exist.3 Patient reports indicate that Black and African American (AA) women were more likely than non-Hispanic white women to feel that their healthcare clinician did not listen, explain clearly, respect their opinions, or spend enough time.4 Distrust in particular is a critical issue when it comes to improving quality of care and can be exacerbated when patients do not feel heard, valued, or respected. Historical and current systemic and structural racism has led to the healthcare system earning the distrust of Black/AA patients, thereby requiring those in healthcare to earn back this trust.5 Data show that communication underpins trust, and ineffective communication can lead to dire consequences that ultimately impact patients’ health understanding, satisfaction, and treatment planning.2

 

The United States is currently witnessing the effects of distrust and its impact on health outcomes. We have seen how the COVID-19 pandemic has disproportionately affected communities of color and how distrust of the medical system has led to questioning, reluctance, and/or fear to receive the vaccine.6 Prior to this pandemic, the US saw devastating rates of maternal mortality and morbidity amongst Black/AA pregnant and birthing individuals. Black/AA pregnant persons have the highest and most rapidly rising rates of maternal mortality and morbidity amongst any racial or ethnic group in the US, with a rate 3.1 times higher than non-Hispanic white persons.7

 

To address this longstanding issue of distrust of the medical system, specifically in the maternal health space, a collaborative partnership between Northwestern University Feinberg School of Medicine’s Center for Health Equity Transformation, Access Community Health Network (ACCESS), and AllianceChicago, was created to implement an innovative intervention aimed at improving perinatal care for Black/AA pregnant individuals through a project called “OPTIMIZE.” At the core of the intervention is the implementation of trust building conversations between clinicians and patients.

OPTIMIZE Study

A five-year NIH National Institute of Minority Health and Health Disparities funded research trial, OPTIMIZE seeks to redesign the standard delivery of routine perinatal care and center it on Black/AA pregnant and birthing individuals. During the first year of this project, the OPTIMIZE team undertook extensive qualitative work to understand patient and stakeholder perspectives about ways to improve perinatal care. Interviews took place via Zoom/phone and were recorded and transcribed. The study team utilized a Rapid Analysis Process, which is used to adopt findings quickly for implementation and has shown similar results to in-depth analysis.8 A team of four researchers first used deductive coding to create an initial set of themes based on the interview guides. The researchers then tested initial themes by dual analyzing two sets of interviews and convened to reach consensus. Researchers analyzed the set of 30 transcripts by using a combination of deductive and inductive coding to identify common themes and subthemes. Overwhelmingly, respondents discussed the importance of building trust as a foundation for better perinatal care.

Black and Pregnant Birthing Persons’ Perspectives

Table 1. Demographic Characteristics of Patient Participants (n=9)

Characteristic

Value

 

 

Age, mean (range)

28.67 (22-40)

 

 

Education (highest level completed, n (%)

 

No formal education

0 (0%)

Elementary

0 (0%)

Junior high school

0 (0%)

High school

4 (44.4%)

Some college

4 (44.4%)

College (4 years or more)

0 (0%)

Unknown or not reported

1 (11.1%)

 

 

Marital Status

 

Married

1 (10%)

Widowed

0 (0%)

Living as married

2 (20%)

Divorced

0 (0%)

Separated

0 (0%)

Single, never been married

6 (60%)

Unknown or not reported

1 (10%)

 

 

Number of family members in the home including self, mean (range)

2.75 (1-5)

 

 

Employment Status

 

Unable to work

1 (9.1%)

Looking for work

1 (9.1%)

Unemployed

3 (27.3%)

Part-time employed

1 (9.1%)

Full-time employed

3 (27.3%)

Student

1 (9.1%)

Unknown or not reported

1 (9.1%)

 

 

Race/Ethnicity, can select multiple options, n (%)

 

White

0 (0%)

Hispanic or Latino

0 (0%)

Black or African American

8 (80%)

Native American or American Indian

1 (10%)

Asian / Pacific Islander

0 (0%)

Other

0 (0%)

Unknown or not reported

1 (10%)

 

 

Gender can select multiple options, n (%)

 

Male

0 (0%)

Female

8 (88.9%)

Non-binary/third gender

0 (0%)

Prefer to self-describe

0 (0%)

Other

0 (0%)

Unknown or not reported

1 (11.1%)

Participants included a convenience sample of (n=9) Black or AA individuals who were either pregnant at the time of the interview or had given birth within the last six months. Participant characteristics are described in Table 1. Participants were recruited by staff from community health centers using recruitment fliers and individual outreach. Interviews included questions about prenatal care, birthing experiences, and postpartum care (see Appendix A). Through these discussions, respondents shared the importance of listening to mothers/patients. As described by one patient, “the best way to give care is you have to listen to the patient…they can be scared…but you have to be able to unwrap all that and really listen to what they’re really saying.” Respondents discussed the importance of establishing good rapport, feeling in tune with their clinician, and feeling centered by their clinical team. Respondents want clinicians to offer full explanations during visits tailored to the patients’ needs. For example, one participant stated about their prenatal care clinician, “…to know that like I was able to have someone that was able to inform me, educate me, especially on things that I didn’t know, and to answer my questions, it was definitely uplifting.” Respondents felt it important for clinicians to trust them, trust that they know their own body, and for clinicians to respect their choices. One participant described telling their doctors that something wasn’t right with their pregnancy, but the doctor insisted that everything was fine, even though an issue was eventually detected: “I knew that, if you guys listen to me, I know my body, something is not right…No one listened to me…Everyone keeps telling me it’s okay. And the whole time it was not okay.” Respondents also want to be asked questions by their clinicians, which may even empower them to ask questions that they would otherwise feel uncomfortable asking. As one participant aptly described, “I feel like that’d be a way…to connect with your patients and get to know them…just ask the questions. Cause sometimes we may not want to ask questions cause we feel uncomfortable and maybe ask questions just to stir up the conversation.” Insights from these respondents demonstrated that asking questions, listening, trusting, and spending time to connect with patients are critical components of providing respectful and effective perinatal care.

Stakeholder Perspectives

Table 2. Demographic Characteristics of Stakeholder Participants (n = 21)

Characteristic

Value

 

 

Age, mean (range)

37.20 (26-54)

 

 

Education (highest level completed, n (%)

 

No formal education

0 (0%)

Elementary

0 (0%)

Junior high school

0 (0%)

High school

1 (4.8%)

Some college

1 (4.8%)

College (4 year or more)

17 (81.0%)

Unknown or not reported

2 (9.5%)

 

 

Race/Ethnicity, can select multiple options, n (%)

 

White

2 (9.1%)

Hispanic or Latino

2 (9.1%)

Black or African American

11 (50%)

Native American or American Indian

0 (0%)

Asian / Pacific Islander

3 (13.6%)

Other

2 (9.1%)

Unknown or not reported

2 (9.1%)

 

 

Gender can select multiple options, n (%)

 

Male

0 (0%)

Female

19 (90.5%)

Non-binary/third gender

0 (0%)

Prefer to self-describe

0 (0%)

Other

0 (0%)

Unknown or not reported

2 (9.5%)

Stakeholder participants included (n=21) physicians, nurses, social workers/case managers, and national leaders with expertise in Black maternal health. Participant characteristics are described in Table 2. A purposive sample of participants were identified by the study team with the aid of clinical team rosters and professional networks. Participants were recruited via email outreach to community health centers and community-based organizations. Interviews included questions about perspectives on and experiences of working with pregnant individuals (see Appendix B). Respondents shared ideas about the complex nature of improving perinatal care for and establishing trust with Black/AA pregnant individuals, particularly given their lived experiences. One participant stated “…data supports their lived experience…no matter their income…socioeconomic status or their education level…they are treated differently. They’re not listened to, they’re not heard…” Participants also shared considerations for how healthcare teams and systems can improve care. One participant described this process as “…there has to be a fundamental reimagining of how perinatal care is provided. We created it on a flawed belief that women are not capable of birthing on their own and need assistance through either forceps or a hospital…So all of these false beliefs that were taught in medical school and written textbooks are still embedded in how we treat and care for patients.” There is often much emphasis on how clinicians can or should gain trust from patients, but respondents also shared that trust building is bidirectional. For clinicians to gain trust, they must also trust the patients and their decisions. This means seeking to understand patients’ life narratives and contexts, including social supports, family traditions, culture, and beliefs. One participant described how we must rethink trust building by stating “We usually talk about it in the sense of patients trusting their providers. When we work with Black birthing people…they want providers to trust them…that [they] want to have children who are loved and valued as well. And that [they’re] making the best choices and decisions for [their] families.” With heightened trust, respondents felt that there would be a higher likelihood of patients attending appointments, believing the information presented to them, and even “hearing” the information differently, thereby improving health literacy. Underlying many of these discussions was a recognition of the role of racism in healthcare, and how perinatal care improvement cannot be addressed without acknowledging this history and its continuation into present day systems. As one participant stated “So I think given…our long history of distrust of the medical system…for a variety of very valid reasons…I think being able to create that bridge of trust lays the pathways and foundations for behavior change…it creates the opportunity for there to be bi-directional change…it creates the opportunity for that individual to increase their health literacy…because they can actually hear you because they, they believe that the information that you are providing is in their best interest.” Overwhelmingly, stakeholder perspectives aligned with patient perspectives in that clinicians should spend time to understand patients’ goals and needs, respect patients’ choices, and trust their decisions about their own bodies.

 

Given the importance of listening to patients and building trust to improve communication and health outcomes, the findings from these interviews guided the implementation of trust-building questions at health centers. Participating health centers in the OPTIMIZE study began recruiting patients in June 2021 and built prompts into their electronic health record (EHR) platforms to guide clinicians in critical conversations that would begin trust building. At the first prenatal care visit, EHR flowsheets include prompts to start conversations around patient goals, challenges, concerns, safety issues, and social determinants of health needs. Implementation success will be measured in a variety of ways, including follow up interviews, patient surveys, and medical record abstraction. For example, at the conclusion of the trial, EHR data will demonstrate clinicians’ rate of uptake (e.g., how often clinicians asked and documented trust building questions). Patient participants will also answer survey questions about their experiences of care, including questions about feeling heard and respected. The start of this conversation about patients’ health and life narratives has the potential to increase patient agency. Initiating trust sets the stage for enabling patients and clinical care team members to exchange information and receive follow-up assistance from care coordinators, patient navigators, or other support staff that truly center Black/AA pregnant and birthing persons in a way that routine perinatal care has traditionally failed.

Conclusion

The OPTIMIZE study will measure patient experiences of perinatal care, which will provide important insight into how these seemingly simple questions may help patients feel heard and connected with their care team. Although this trust building intervention is taking place within prenatal care, these are questions that could easily be applied in any clinical care setting, ultimately giving care teams in diverse specialties a simple yet effective method of building trust and improving care for all patients.

 

 

Appendix A. Sample Patient Interview Questions

1.I’d like to reflect on your prenatal care experience: What does prenatal care mean to you?

a.PROBES:

i.What kinds of questions do/did you ask your healthcare provider about prenatal care?

ii.What kind of questions would you want to ask your healthcare provider about prenatal care that you haven’t asked/didn’t ask?

iii.What kinds of questions would you want to ask, but maybe feel uncomfortable asking?

iv.What questions did you want your health care provider to ask you?

 

2.Could you please describe your experience with prenatal care at your care site?

a.PROBES:

i.Would you say your experience was positive or negative?

ii.What made your experiences positive or negative?

iii.What were/are some of the challenges you experience(d)?

iv.Would you say that you trust/trusted your prenatal care clinician?

v.[If yes] What led you to feel this way?

vi.[If no] Why not and how could this provider/provider team/clinic have better established your trust?

vii.Did you/have you felt heard by your provider at your care site?

 

3.[For those you have given birth] As much as you’re comfortable, how would you describe your experience when you gave birth?

a.PROBES:

i.Where did you give birth (e.g. at home, hospital, etc.)?

ii.What would have been helpful to know before you gave birth?

iii.What type of materials or other information did you receive that was the most helpful?

iv.What is some advice you would give to healthcare providers to improve medical care for individuals giving birth?

v.Is there any advice you would give to other pregnant moms about the birth experience, communicating with the healthcare team, or how to have the most positive experience?

 

4.[For those you have given birth] As much as you’re comfortable, how would you describe your postpartum experience?

a.PROBES:

i.[if they gave birth at a hospital] What support or care did you receive when you left the hospital?

ii.[if they gave birth outside of a hospital] What support or care did you receive after giving birth?

iii.What would have been helpful to know about postpartum care?

iv.What type of materials or other information did you receive that was most helpful?

 

5.What kinds of questions did you ask your healthcare provider about in the first 3 months after giving birth? What didn’t you ask?

a.PROBES:

i.Can you tell me reasons why you didn’t ask certain questions?

ii.What is some advice you would give to healthcare providers to improve postpartum medical care for women or pregnant moms?

iii.What advice might you give to other pregnant moms about the postpartum period?

Appendix B. Sample Stakeholder Interview Questions

1.In your work, have you seen differences in perinatal care experiences or outcomes for Af-rican American and Black patients compared to others?

a.PROBES:

i.If so, could you tell me more about what you’ve seen?

ii.Do you think there needs to be a change in how perinatal care is provided in order to ad-dress disparities?

 

2.What do you think is the role of trust in the provision of effective perinatal care for African American and Black patients?

 

3.What kinds of services or programs exist at your organization during the pregnancy and the postpartum period?

a.PROBE:

i.Which services have been successful or particularly helpful to your patients?

 

4.What types of additional supports, resources, or services do you think need to be in place to help reduce disparities in perinatal care for African American and Black patients

 

5.Do you or others on your team regularly screen pregnant patients for social determi-nants of health needs? This may include things like financial difficulties, housing, food insecurity, childcare, safety/domestic vio-lence/interpersonal violence, transportation, utilities, or education.

a.PROBES:

i.When and how is the screening done?

ii.[If no] Would adding this to your workflow make it harder to provide care or change the way you give care?

 

6.Who do you think is best suited to address social determinants of health?

 

7.What are areas of perinatal care that you wish you could address but currently don’t address either because of time, lack of a workflow/system, capacity, or some other reason? 

a.PROBE:

i.From your perspective, what would be the best way to incorporate some of these addi-tional needs?

 

8.Now I’d like to ask you the opposite of what I just asked. What are some areas of perinatal care that you currently address but think could be better addressed in another way? (e.g. are there things you spend too much time on that you think could be more efficiently and effectively addressed?)

a.PROBES:

i.What are questions you currently ask that you think would be more appropriate or helpful if addressed by someone else? And why?

ii.How could these topics be better addressed?

 

Acknowledgements

This research is supported by a grant (R01MD014068) from the National Institute on Minority Health and Health Disparities of the National Institutes of Health (NIH). This grant receives support from Northwestern University Center for Clinical and Translational Sciences Institute (NUCATS). NUCATS is funded in part by a Clinical and Translational Science Award grant from the NIH (UL1TR001422). The content of this poster is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.

Disclosure Statement

The author(s) have no relevant financial disclosures or conflicts of interest.

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About the Author

Melissa Simon, MD, MPH

Dr. Simon’s primary research interests are aimed at promoting health equity and eliminating health disparities among low income, medically underserved women across the lifespan. Integrating health services research with social epidemiologic models, Dr. Simon’s research focuses on interventions (such as patient navigation and community health outreach workers) that aim to reduce and eliminate such disparities. She is the founding director of the Center for Health Equity Transformation and the Chicago Cancer Health Equity Collaborative. Finally, she serves as a member of the US Preventive Services Task Force (USPSTF) and the National Academy of Medicine’s Roundtable for the Promotion of Health Equity.

 

Sankirtana Danner

Sankirtana Danner is a Clinical Research Associate at Northwestern University’s Center for Health Equity Transformation.

Salma Saavedra

Salma Saavedra is a Research Assistant at Northwestern University’s Center for Health Equity Transformation.

Fallon Flowers

Fallon Flowers is a Clinical Research Nurse at Access Community Health Network.

Alema Jackson

Alema Jackson is a Clinical Research Nurse at Access Community Health Network.

Janell Ross

Janell Ross is a Research Assistant at Access Community Health Network.

 

Hiba Abbas

Hiba Abbas is the Manager of Clinical Research at Access Community Health Network.

Elizabeth Adetoro

Elizabeth Adetoro is a Research Manager at AllianceChicago.

Abbey Ekong

Abbey Ekong is a Research Coordinator at AllianceChicago.

Cassandra Osei

Cassandra Osei is a Clinical Research Project Manager at Northwestern University’s Center for Health Equity Transformation.

Nicolás Francone

Nicolás Francone is a Medical Student-M4 at Northwestern University Feinberg School of Medicine.

Jonathan Alhalel

Jonathan Alhalel is a Medical Student-M4 at Northwestern University Feinberg School of Medicine.

Lisa Masinter

Dr. Masinter is the Director of Research at AllianceChicago.

Danielle Lazar

Danielle is the Executive Director of Research, Evaluation and Innovation at Access Community Health Network.

 

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