Leveraging community advisory boards within travel medicine to help reduce malaria incidence in refugees, immigrants and migrants visiting friends and relatives abroad: reflections from the Minnesota Malaria Community Advisory Board on patient-provider interactions

Introduction

The United States is one of the most culturally diverse, immigrant-built countries in the world. While the immigrant population in the United States is expected to greatly increase over the next decades, currently refugees, immigrants, and migrants (RIM) represent 14% of the country’s population with ~22% of households using a primary language other than English at home.¹ The richness and diversity of this population is not captured by the broad traditional race/ethnicity categorizations and the health needs of the RIM population, including international travel-related medicine are frequently not met.

Many factors influence an individual’s health including individual characteristics, personal behaviours, and social determinants such as—accessibility to healthcare including insurance coverage and economic stability. Migration is a potential risk factor for poor health outcomes depending on the circumstances surrounding the migration process including the lived experiences of RIM communities in their home country, the migration journey, integration policies in the host country, and cultural and linguistic barriers.² While there are differences in every individual’s health needs including travel health needs, today’s RIM patients are often visiting friends and relatives (VFRs) travellers.

Too often, communities in greatest need are left out of priority health need discussions and in developing solutions. When affected communities do not have a voice, proposed solutions are less effective, ineffective, or even harmful. It is increasingly evident that VFRs have the least access to travel medicine care while experiencing the greatest risk of travel-related health concerns.³ To effectively design interventions and decrease disparities in travellers’ health, involvement of RIM communities is essential. Community Advisory Boards (CABs) have been a cornerstone to successful community-based participatory research (CBPR) for many public health and medical interventions. Thoughtfully established CABs can begin to address social, racial, and health inequities by centering community voices and sharing power.⁴ Although well known in other disciplines, CABs are rarely employed in travel medicine. Travel medicine has traditionally been a ‘top-down’ discipline which has historically elicited limited community involvement. This project aimed to reduce malaria incidence among sub-Saharan African (SSA) VFRs. We adopted a CBPR approach relying heavily on a well-established CAB.⁴ This article, spearheaded by the CAB members aims to:

1. highlight the role of the CAB in travel medicine and improving care for RIM patients to inspire more community engagement in travel medicine,

2. provide the CAB’s perspective and insight gained from the CBPR project on RIM patients’ interactions with healthcare providers,

3. provide a practical toolkit for establishing and conducting a CAB and

4. recommend practical tools on how to improve RIM patient-provider interactions.

The role of CABs in travel medicine

The malaria prevention project was conducted in partnership with researchers from University of Minnesota, Minnesota Department of Health, Albert Einstein College of Medicine, Uniformed Services University, Hennepin County Medical Center, and HealthPartners and was supported by the CDC and Heading Home Healthy. The CAB was made up of representatives from the largest West African communities in Minnesota. The shared experiences of the CABs as both members of RIM communities and users of the US healthcare system were key to the success of this project—from project design to implementation. The CAB participated in setting priorities, helped formulate culturally appropriate questions, guided community communication, helped recruit study participants, facilitated key informant and focus groups interviews, assisted in interpretating results, and assisted in manuscript preparation and publications.⁴ They played a key role in the development of culturally and linguistically appropriate interventions including travel health educational materials using appropriate forums or the most effective media mechanisms.⁵ Members frequently represented community-based organizations, but also the broader communities, allowing them to leverage work with other community partners while providing insight on their personal experiences as VFRs. To highlight how the perspectives of CAB members aligned with the research we highlight three domains below.

Reflections of the Minnesota CAB on barriers to travel care for VFRs

Systemic barriers to healthcare

In-depth interviews of 73 African VFRs who had travelled to SSA and subsequently were diagnosed with malaria in Minnesota between 2016 and 2019 were conducted.

Barriers identified during these interviews included location of travel clinics and health facilities, transportation, provider knowledge about malaria (travel medicine), cost, unfavourable clinic hours, cultural and linguistic barriers and specific issues during face-to-face interactions with healthcare providers described below. The issues highlighted resonated with the CAB as it drew upon up the shared experiences with study participants. The relatable experiences of the CAB as users of US healthcare provided a more nuanced understanding of the study data collected, underscored how those issues impacted health seeking behaviours of the RIM community, and were vital in proposing solutions.

Provider interactions with RIM patients

Patient satisfaction and health outcomes are influenced by trust in the health system and effective communication with providers.⁶ The physician-patient relationship has six fundamental elements which play a crucial role in trust-building between patients and providers; patient’s choice, doctor’s competence, continuity of care, good communication, doctor’s empathy, and absence of conflict of interest.⁶ Distrust in the healthcare system, cultural and linguistic differences, systemic bias and racism, and differing social-determinants present challenges in multiple of these essential elements resulting in certain groups receiving less quality care leading to poorer health outcomes and disparities.⁷ RIM communities often perceive, sometimes correctly, that U.S. clinicians lack knowledge on diseases that disproportionately affect them such as malaria.⁸ This notion is salient to travel health, especially since VFRs frequently seek travel-related care in primary care, urgent care and emergency settings where cultural and linguistic appropriate care, and knowledge of travellers health may be limited.

The participants shared common themes about challenges to receiving care, including providers not listening or addressing their health concerns, lack of knowledge about malaria, discounting or ignoring the patient’s knowledge about malaria, initial misdiagnosis even when travel information and malaria diagnosis suspicions were shared. Participants also reported delays in diagnosis and appropriate treatment, over-reaction based on bias or lack of knowledge about fever in the returned traveller (e.g. patients placed in quarantine), need for multiple visits to have their malaria appropriately managed, and cultural differences between themselves and their providers they believed negatively impacted their visit.³ CAB members, having experienced many of these issues personally or with close associates, felt establishing trust was a key missing link in providing care to these communities. We noted that even when RIM patients presented for care, previous negative interactions with providers sometimes causes them to withhold vital health information. A dramatic example is a patient who died from malaria in Minnesota after presenting critically ill and denying international travel—following her death the family shared the patient did not reveal travel to SSA due to worry that healthcare providers would think she had Ebola and react negatively. Box 1 outlines example characteristic quotes expressed during key informant interviews that personally resonated with CAB members personal-lived experiences. CAB members impressions were that all these negative experiences impact trust in the healthcare system and providers and make RIM communities reluctant to seek care, especially following international travel.

Box 1.

Common themes and sample quotes from malaria case interviews with VFRs diagnosed with malaria in Minnesota that particularly resonated with CAB members based on personal experiences.

1. Providers discounting the patient’s knowledge about malaria

—‘When I went to urgent care, I told the doctor I have malaria and they did not believe me initially. It took a while before the doctor finally decided to test me for malaria.’

2. Initial misdiagnosis by providers

—‘The doctors did not know it was malaria and I was transferred 4 times. Some thought I had Ebola and was placed in quarantine and had to wear a facemask. Many of the doctors were scared of malaria’.

—‘The doctors made it a big deal that I had malaria. I thought I would be quarantined. There were too many doctors asking questions, I felt like a guinea pig’.

—‘I was scared healthcare providers would think I had Ebola’

—‘I did not share travel information initially because I was afraid I might be quarantined, put into isolation. I just came from foreign country, so I was scared of isolation and stigma.’

3. Providers lack of knowledge about malaria:

—‘The doctor had not had a malaria patient before and did not know what to do but he did a good job to try to do his best. I told the doctor what to look for because of my recent trip to Nigeria and my symptoms.’

—‘I was concerned about seeing by a health care provider who does not know about malaria. The doctor who saw me looked at MDH website to learn about malaria. I also told him to test me for malaria before he did it.’

—‘The doctors did not know it was malaria, was transferred 4 times. Some thought I had Ebola and was placed in quarantine and had to wear a facemask. Many of the doctors were scared of malaria.’

Pharmacists interaction with RIM patients

Pharmacists play a vital role in educating patients. Ideally, a pharmacist’s interaction with a patient should leave the patient well informed, including how to take medication prescribed and potential adverse effects. Communication is particularly important with Limited English proficiency (LEP) and low health literacy patients. Frequently, particularly with antimalarials, medication cost and drug availability need to be addressed. Limited interaction or language barriers may affect the quantity and quality of information shared which can negatively impact patients’ medication adherence.⁹ The primary barrier to successfully taking an antimalarial is cost.¹⁰ Participants frequently reported partially filling prescriptions and that they were not offered/recommended a less costly alternatives by the pharmacists/pharmacies. Participants felt that pharmacists/pharmacies usually did not take their concerns seriously or try to help them resolve issues of affordability. After not receiving, or receiving inadequate antimalarials, some participants reported ineffective or ill-advised strategies such as dividing one prescription up among family members with the belief that some medication was better than none or putting scripts together to give to a particular family member (e.g. the child or father) if going on a family trip. Others reported planning to buy medication after arrival in the destination country, and resorting to non-prescription alternatives (e.g. herbal medications, artesunate tea).

All the stories shared by the participants deeply resonated with the CAB members. The CAB’s shared experience, together with research findings,^3,4,10 highlight gaps in pharmacist-patient interaction, information dissemination, and counselling offered to VFRs. These insights enabled the project team, under the guidance of the CAB, to develop information for VFRs on how to advocate for themselves and their families for appropriate malaria chemoprophylaxis (https://www.health.state.mn.us/diseases/travel/medcost.pdf).

Recommendations of best practices based on the CABs experience

While many patient face barriers and are vulnerable for many reasons, RIM patients have added nuanced and unique health needs affecting their ability to access healthcare efficiently, overcome barriers, and obtain quality care as highlighted above. These barriers may be compounded for VFRs who may have limited access to travel specialists. Health literacy and LEP play a significant role in the ability to advocate for themselves, their family, and their community. Another common barrier is the power differential between providers and RIM patients which can be complicated by cultural differences and perceived bias. Ideally, the provider should view the patient as an expert in life’s experiences and together co-create a treatment plan, work towards building trust and understanding the patients’ unique circumstances. To establish healthy patient-provider relationships, health systems must provide quality medical interpreter services, train the health workforce in cultural humility, and decrease the power-differential between providers and patients. U.S. health providers need more travel-medicine education to better provide care for an increasingly diverse and mobile population. Data shows significant malaria-related morbidity and mortality among VFRs³ making it essential that travel-medicine adopts a more patient and community centered approach to care and also non-travel medicine providers increase their awareness and knowledge about malaria. A better understanding of travellers’ health in all healthcare settings would benefit patient care and increase trust of communities in the healthcare system. Box 2 highlights CAB recommended practical advice and tools on what health providers can do to improve communication and access to malaria care for VFR patients.

Box 2.

CAB recommended practical advice and tools of what individual practitioners or pharmacists can do to improve communication and thus improve access to travel care for VFR patients.

• General (health systems and healthcare providers)

• – Institute a question at intake for all patients on recent international travel (last 21-30 days)

• Routinely ask (at annual visits) if your patient plans to travel internationally within the next year and help schedule pre-travel clinic appointments in advance.

• Create access to on-call travel medicine or infectious disease specialists concerning travel-related communicable, or medically urgent diseases (e.g. malaria)

• Offer culturally relevant health education materials that reflect the background and demographics of your patients.

• Health educational materials should also be made available in multiple languages based on patient demographics to enhance their ability to understand and utilize the health information.

• Encourage continuing medical education of all providers especially primary care and emergency care providers, on important travel related diseases, such as malaria.

• Offer cultural competency training and resource for providers to help improve their interaction with RIM patients.

• To help building trust, providers should make a conscious effort to express empathy, connect with their patients on a personal level, listen and address their concerns to make them feel heard.

• Quality medical interpreter services should be made available to RIM patients with limited English Proficiency (LEP) to enhance communication with providers.

• Travel medicine provider

• – Provide emergency pre-travel appointment services including Telemedicine consults for last-minute/emergency travellers

• Encourage patients to ‘shop around’ for affordable medications (A previous study found that the cost of malaria chemoprophylaxis prices can vary by 10-fold from one pharmacy to another within the same geographical area).¹⁰

• Encourage patients to obtain malaria chemoprophylaxis prior to international travel due to high prevalence of counterfeit and substandard antimalarials in some destination countries.

• Assist patient with finding most affordable drugs if not covered by insurance including encouraging alternative online pharmacies with lower cost (e.g. Cost Plus Drugs) and sharing drug coupons when available.

• Open dialogue with pharmacies/pharmacist on drug availability and cost. (e.g. include duration of prescriptions and encourage pharmacy to reach out if they are unable to fill entire prescription)

• Pharmacists

• – Educate patients on medication compliance, side effects, and appropriate actions to be taken when experiencing side effects.

• When unable to dispense full amount due to unavailability or cost, contact the provider to discuss how to assist the patient. There may be cheaper alternative agents or provider may be able to help patient resolve.

• Provide assistance with filling prescriptions for individuals and/or families travelling and helping to address concerns related to cost of medication by:

  • ▪ Providing drug coupons when available

  • ▪ Utilizing ‘medicine vacation waivers’ when needed. This includes patients to advocate for an exception to a one month limit on drug supply by insurance plans such as Minnesota Medicaid.

  • ▪ Direction to online generic pharmacy with lower pricing

• – If only drugs can be fill at a regular time interval inquire if the patient can have a health care proxy pick up and send them at their travel destination in cases where patient is planning an extended trip

NB: Ideally every community should have a voice and systems addressing their needs to increase trust in the healthcare system. Urge your health system or public health department to establish an ongoing CAB with your local community to address healthcare needs utilizing the CAB toolkit.

At a public health system level, community engagement is essential for effective prioritization of health education and communication to public health officials, clinical care providers, researchers and the lay public. Our experience demonstrated CBPR co-led by health services researchers, public health representatives, providers, and community leaders and members can be a successful method of collaboration.¹¹ Community engagement through CABs allows community members to share their lived experience, and allows stakeholders to reach, communicate, and understand community priorities effectively.

Conclusion

Travel medicine has not traditionally involved communities in developing priorities, conducting research, understanding community knowledge, developing and disseminating health materials, in designing systems to increase access and quality clinical care. Leveraging community’s knowledge, giving communities a voice and a ‘place at the table’, will lead to better clinical care and health outcomes for VFRs. Creating a CAB is a simple yet challenging concept. Therefore, we have developed a step-by-step practical toolkit for establishing a CAB from experience and lessons-learned through, and with this CAB for over 10-years (CAB toolkit). We believe greater use of CABs in travel medicine will strengthen the field through better research, increased access and utilization of services, and increased adherence to recommendations.

Acknowledgements

The authors would like to thank the additional co-members of the Minnesota Malaria Community Advisory Board for their past and ongoing support of the Malaria Prevention Project: Jackson George, David D. Wilson, Jr, Wilhelmina Holder, Agatha Lamin, Joyce Onyekaba, Arthur Biah, Clarence Yaskey, Baninla Ladze, and Tolulope Ola.

Funding

This work was supported by the US Centers for Disease Control and Prevention, grant number U01CK000357 (Fed Award Title: Reduction of Malaria in US Residents Returning from Overseas Travel) and GTEN grant U01CK000633 (Federal Award Project title: Global TravEpiNet (GTEN): U.S. Travellers’ Health Research, Surveillance, Communication and Outreach Network). The funders had no role in study design, data collection and analysis, preparation of the manuscript, or decision to publish.

Author Contributions

Joseline Haizel-Cobbina (Conceptualization-Equal, Data curation-Equal, Formal analysis-Lead, Investigation-Lead, Methodology-Equal, Visualization-Equal, Writing—original draft-Lead, Writing—review & editing-Lead), Ama Eli Boumi (Conceptualization-Equal, Writing—review & editing-Equal), Erica Chung (Conceptualization-Equal, Writing—review & editing-Equal), James Sobboh (Conceptualization-Equal, Writing—review & editing-Equal), Jonathan Rose (Conceptualization-Equal, Writing—review & editing-Equal), Esther Mwangi (Conceptualization-Equal, Writing—review & editing-Equal), Rebecca Johnson (Conceptualization-Equal, Writing—review & editing-Equal), Richard B. Oni (Conceptualization-Equal, Writing—review & editing-Equal), Danushka Wanduragala (Conceptualization-Equal, Data curation-Equal, Formal analysis-Equal, Funding acquisition-Lead, Methodology-Supporting, Project administration-Lead, Writing—review & editing-Equal), and William Stauffer (Conceptualization-Lead, Data curation-Supporting, Funding acquisition-Lead, Resources-Supporting, Supervision-Lead, Writing—review & editing-Equal).

Conflict of interest: The authors have no competing interest to declare.

Data availability

The data underlying this article will be shared on reasonable request to the corresponding author.