Confronting Disparities in Telehepatology Research.

Telehealth leverages technology for the remote delivery of health care, and its use has increased rapidly since the coronavirus disease-2019 pandemic.1Louissaint J. Gibbs J.T. Lok A.S. et al.Strategies to improve video visit use in persons with liver disease.Gastroenterology. 2021; 161: 1080-1084.e2Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar Simultaneously, clinical investigation into the ability of telehealth, and specifically telemonitoring, to improve the care of persons with chronic liver disease also has increased. Telemonitoring, which is the use of technology to monitor patients remotely, has had a burgeoning impact on the entire clinical spectrum of liver disease and transplantation. Recent examples include a smartphone application that reduced readmissions for hepatic encephalopathy, a Bluetooth-enabled weight scale that was informative in the management of ascites, and a wearable step counter that identified patients at risk for hospitalization.2Ganapathy D. Acharya C. Lachar J. et al.The patient buddy app can potentially prevent hepatic encephalopathy-related readmissions.Liver Int. 2017; 37: 1843-1851Crossref PubMed Scopus (40) Google Scholar, 3Bloom P. Wang T. Marx M. et al.A smartphone app to manage cirrhotic ascites among outpatients: feasibility study.JMIR Med Inform. 2020; 8e17770Crossref PubMed Scopus (12) Google Scholar, 4Lin F.-P. Bloomer P.M. Grubbs R.K. et al.Low daily step count is associated with a high risk of hospital admission and death in community-dwelling patients with cirrhosis.Clin Gastroenterol Hepatol. 2022; 20: 1813-1820.e2Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar In addition, a home remote patient monitoring program was shown to improve post-transplant care.5Lee T.C. Kaiser T.E. Alloway R. et al.Telemedicine based remote home monitoring after liver transplantation: results of a randomized prospective trial.Ann Surg. 2019; 270: 564-572Crossref PubMed Scopus (45) Google Scholar Clinical research continues to highlight opportunities for the expansion of telehealth interventions to augment and advance care. However, already there are signs of disparities within telehealth research. For example, both liver-related and non–liver-related telehealth studies frequently have included predominantly White (>70%) and college-educated cohorts, required English proficiency for inclusion, and reported household incomes significantly higher than the national average.4Lin F.-P. Bloomer P.M. Grubbs R.K. et al.Low daily step count is associated with a high risk of hospital admission and death in community-dwelling patients with cirrhosis.Clin Gastroenterol Hepatol. 2022; 20: 1813-1820.e2Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar, 5Lee T.C. Kaiser T.E. Alloway R. et al.Telemedicine based remote home monitoring after liver transplantation: results of a randomized prospective trial.Ann Surg. 2019; 270: 564-572Crossref PubMed Scopus (45) Google Scholar, 6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar, 7Grossman L.V. Masterson Creber R.M. Benda N.C. et al.Interventions to increase patient portal use in vulnerable populations: a systematic review.J Am Med Inform Assoc. 2019; 26: 855-870Crossref PubMed Scopus (88) Google Scholar, 8Ismond K.P. Eslamparast T. Farhat K. et al.Assessing patient proficiency with internet-connected technology and their preferences for e-health in cirrhosis.J Med Syst. 2021; 45: 72Crossref PubMed Scopus (3) Google Scholar In addition, nonreporting of key demographic measures is common, as seen in one systematic review in which cohort race, ethnicity, and language were not reported in 22%, 44%, and 50% of included studies, respectively.7Grossman L.V. Masterson Creber R.M. Benda N.C. et al.Interventions to increase patient portal use in vulnerable populations: a systematic review.J Am Med Inform Assoc. 2019; 26: 855-870Crossref PubMed Scopus (88) Google Scholar Although much of these disparities are a product of larger disparities related to digital access, they need not be woven into research proposals and protocols within liver-related telehealth (telehepatology); with consequences that will have a lasting effect on clinical care. Herein, we propose a research agenda for liver-related telehealth studies to promote equity. Although our focus is on research involving telemonitoring interventions, the principles apply broadly to all aspects of telehealth research. We outline research challenges and offer solutions that directly impact how we plan, recruit, conduct, and sustain telehealth interventions. The intention is to highlight opportunities in telehepatology research that will promote a realization of the promise of telehealth to deliver equitable care (Figure 1). Telehealth interventions evaluated in clinical research must reflect the diverse needs of our patients. First, the means to engage in digital health are not uniform across diverse populations, therefore it is necessary to understand the degree of digital access of the local community before the creation, introduction, and study of telehealth interventions. Although rates of smartphone ownership among persons with liver disease are frequently 90% or higher,1Louissaint J. Gibbs J.T. Lok A.S. et al.Strategies to improve video visit use in persons with liver disease.Gastroenterology. 2021; 161: 1080-1084.e2Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar,3Bloom P. Wang T. Marx M. et al.A smartphone app to manage cirrhotic ascites among outpatients: feasibility study.JMIR Med Inform. 2020; 8e17770Crossref PubMed Scopus (12) Google Scholar,6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar these rates are an incomplete representation of digital access. Such estimates frequently derive not from unselected cohorts of clinic patients, but are biased by inclusion criteria requiring access to participate in a technology-related study. Second, digital health tools are rendered useless without adequate proficiency to use such tools. Similar to health literacy, digital health literacy determines how patients receive, interact with, understand, and use health information in a digital format.9Dunn P. Hazzard E. Technology approaches to digital health literacy.Int J Cardiol. 2019; 293: 294-296Abstract Full Text Full Text PDF PubMed Scopus (57) Google Scholar Low digital literacy often precludes participation in a telehealth intervention and it can nearly double the time burden needed to interact with the technology compared with those with higher levels of digital literacy.10Sisodia R.C. Rodriguez J.A. Sequist T.D. Digital disparities: lessons learned from a patient reported outcomes program during the COVID-19 pandemic.J Am Med Inform Assoc. 2021; 28: 2265-2268Crossref PubMed Scopus (14) Google Scholar In addition, discomfort with technology diminishes interest in, and use of, telehealth interventions.6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar These factors may explain why the use of a hepatic encephalopathy–related smartphone application was low despite high initial interest.6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar When digital health interventions are used that do not match the digital literacy of the target population, large groups inevitably are excluded from study. Conceptually, a telehealth needs assessment seeks to gather information from end users regarding barriers and facilitators to uptake and use.11Fouquet S.D. Miranda A.T. Asking the right questions-human factors considerations for telemedicine design.Curr Allergy Asthma Rep. 2020; 20: 66Crossref PubMed Scopus (7) Google Scholar Needs assessments must be broad and multilevel to identify and address equity concerns in telehealth innovations. Patient surveys and semistructured interviews are important resources to gain insights into user-centered telehealth needs and perceived barriers, such as technology comfort and self-efficacy.11Fouquet S.D. Miranda A.T. Asking the right questions-human factors considerations for telemedicine design.Curr Allergy Asthma Rep. 2020; 20: 66Crossref PubMed Scopus (7) Google Scholar Despite high interest in telehealth tools for liver-related disease management, engagement is limited when technology comfort and confidence is low.6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar Incorporating validated digital health literacy assessments provides an opportunity to recognize the digital health preparedness of potential users.6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar,8Ismond K.P. Eslamparast T. Farhat K. et al.Assessing patient proficiency with internet-connected technology and their preferences for e-health in cirrhosis.J Med Syst. 2021; 45: 72Crossref PubMed Scopus (3) Google Scholar More simplistically, even an assessment of the technologies used in daily living provides a quick and informative surrogate of technological proficiency.12Boot W.R. Charness N. Czaja S.J. et al.Computer proficiency questionnaire: assessing low and high computer proficient seniors.Gerontologist. 2015; 55: 404-411Crossref PubMed Scopus (106) Google Scholar Identification of digital literacy deficits then allows for interventions focused on digital literacy training and the provision of troubleshooting resources. Indeed, digital health training and support is an effective means for increasing the perceived competence of digital health users.13Hawley C.E. Genovese N. Owsiany M.T. et al.Rapid integration of home telehealth visits amidst COVID-19: what do older adults need to succeed?.J Am Geriatr Soc. 2020; 68: 2431-2439Crossref PubMed Scopus (54) Google Scholar One method of providing digital training and support is through the creation of “digital navigators,” whose role on the study teams is to facilitate technology uptake and use.14Wisniewski H. Gorrindo T. Rauseo-Ricupero N. et al.The role of digital navigators in promoting clinical care and technology integration into practice.Digit Biomark. 2020; 4: 119-135Crossref PubMed Scopus (28) Google Scholar For example, confidence in the ability to participate in video-based communication reaches 78.7% in persons with cirrhosis if they know training will be available.8Ismond K.P. Eslamparast T. Farhat K. et al.Assessing patient proficiency with internet-connected technology and their preferences for e-health in cirrhosis.J Med Syst. 2021; 45: 72Crossref PubMed Scopus (3) Google Scholar In addition, high participation rates were achieved in a post–liver transplant telemonitoring program through the use of both in-hospital and at-home digital navigation resources.5Lee T.C. Kaiser T.E. Alloway R. et al.Telemedicine based remote home monitoring after liver transplantation: results of a randomized prospective trial.Ann Surg. 2019; 270: 564-572Crossref PubMed Scopus (45) Google Scholar Centers also must assess existing local community digital needs and disparities. If a significant technology disparity is found, 2 actions are necessary. The first is to reconsider, at that time, study protocols that rely heavily on that mode of digital access in favor of a tool that reflects the capabilities of the patient population. The second is to engage in advocacy to address digital disparities, such as ensuring equitable broadband access and affordability of digital devices.15Rodriguez J.A. Shachar C. Bates D.W. Digital inclusion as health care - supporting health care equity with digital-infrastructure initiatives.N Engl J Med. 2022; 386: 1101-1103Crossref PubMed Scopus (25) Google Scholar The entry point for clinical research is an invitation and subsequent acceptance to participate. Multiple reasons exist for why certain populations may have concerns regarding participation in clinical research studies; reasons extending from historical research malfeasance, communication barriers, and cultural norms and beliefs.16George S. Duran N. Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.Am J Public Health. 2014; 104: e16-e31Crossref PubMed Scopus (814) Google Scholar As clinical research expands into patient-generated data in the virtual space, digital barriers and biases further widen disparities in research study participation. Patient portals are a cautionary case study whereby existing disparities diminish the ability to recruit diverse populations for clinical investigation. Patients who are Black, have Medicaid, have limited English proficiency, or have a high school education or lower are significantly less likely to enroll in the patient portal offered to them.17Anthony D.L. Campos-Castillo C. Lim P.S. Who isn’t using patient portals and why? Evidence and implications from a national sample of US adults.Health Aff (Millwood). 2018; 37: 1948-1954Crossref PubMed Scopus (137) Google Scholar,18Ancker J.S. Nosal S. Hauser D. et al.Access policy and the digital divide in patient access to medical records.Health Policy Technol. 2017; 6: 3-11Crossref Scopus (32) Google Scholar Invitation bias frequently stems from the inaccurate assumptions that those who are from vulnerable groups have less interest in or ability to participate in telehealth.19Miller D.P. Latulipe C. Melius K.A. et al.Primary care providers’ views of patient portals: interview study of perceived benefits and consequences.J Med Internet Res. 2016; 18: e8Crossref PubMed Google Scholar Early disparities in patient portal enrollment partly may explain subsequent disparities found in research examining the downstream use of another digital health tool in liver disease: telehealth visits. In observational studies in which patient portal use was a prerequisite to telehealth visit engagement in hepatology clinics, telehealth visit use was more frequent in White patients and comparatively lower in patients who are Black, have Medicaid insurance, and are older.1Louissaint J. Gibbs J.T. Lok A.S. et al.Strategies to improve video visit use in persons with liver disease.Gastroenterology. 2021; 161: 1080-1084.e2Abstract Full Text Full Text PDF PubMed Scopus (3) Google Scholar,20Wegermann K. Wilder J.M. Parish A. et al.Racial and socioeconomic disparities in utilization of telehealth in patients with liver disease during COVID-19.Dig Dis Sci. 2022; 67: 93-99Crossref PubMed Scopus (41) Google Scholar Low digital health recruitment diversity based on age, sex, race/ethnicity, and language limit the generalizability of study findings and can propagate downstream research disparities in the role of telehealth across the spectrum of chronic liver disease. Reshaping research recruitment strategies toward equity requires an equity-centered approach to eliminate biases and address patient-related concerns surrounding participation. Implicit biases should be removed as barriers to engagement in telehealth interventions. For example, switching to universal opt-out, rather than an opt-in, patient portal enrollment is one method to reduce disparities in portal enrollment and engagement, therefore allowing for the study of the impact of portal use in diverse populations.18Ancker J.S. Nosal S. Hauser D. et al.Access policy and the digital divide in patient access to medical records.Health Policy Technol. 2017; 6: 3-11Crossref Scopus (32) Google Scholar Disparities are reduced further when these tools provide non-English options to serve those with limited English proficiency.18Ancker J.S. Nosal S. Hauser D. et al.Access policy and the digital divide in patient access to medical records.Health Policy Technol. 2017; 6: 3-11Crossref Scopus (32) Google Scholar In addition, health policies that have expanded the use of telehealth visits must be maintained; policies that have allowed for the recruitment of persons who previously were unable to participate.15Rodriguez J.A. Shachar C. Bates D.W. Digital inclusion as health care - supporting health care equity with digital-infrastructure initiatives.N Engl J Med. 2022; 386: 1101-1103Crossref PubMed Scopus (25) Google Scholar Next, the composition of the research team is an important determinant of patient willingness to participate when recruitment is in person. Forming research teams that are reflective of, or culturally congruent, to patient populations promotes recruitment of diverse study groups.16George S. Duran N. Norris K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders.Am J Public Health. 2014; 104: e16-e31Crossref PubMed Scopus (814) Google Scholar A diverse research team also can provide community-specific insights that promote recruitment (ie, an understanding of community digital health resources, identifying high-yield community settings for recruitment, and partnerships with community organizations). In addition, telehealth research is highly amenable to decentralized clinical trials that can be leveraged toward patient recruitment. These study designs remove typical recruitment barriers of transportation and missed work that disproportionally impact underserved patient populations.21Van Norman G.A. Decentralized clinical trials: the future of medical product development?∗.JACC Basic Transl Sci. 2021; 6: 384-387Crossref PubMed Scopus (31) Google Scholar Lastly, telehealth protocols should carefully outline recruitment targets that reflect the racial/ethnic, age distribution, and socioeconomic makeup of the local community.22Chaiyachati K.H. Beidas R.S. Lane-Fall M.B. et al.Weaving equity into the fabric of medical research.J Gen Intern Med. 2022; 37: 2067-2069Crossref PubMed Scopus (4) Google Scholar Purposive, rather than convenience, sampling establishes the goal of recruitment equity early. As recruitment ensues, active surveillance of emerging recruitment disparities can drive protocol adjustments.22Chaiyachati K.H. Beidas R.S. Lane-Fall M.B. et al.Weaving equity into the fabric of medical research.J Gen Intern Med. 2022; 37: 2067-2069Crossref PubMed Scopus (4) Google Scholar Submitted work should comment on how closely the demographics of the included study population compares with the overall center demographics to increase accountability. The rates and reasons for study attrition are as important research outcomes as the results of those fully engaging in a telehealth intervention. Attrition in nontelehealth research is influenced by income, employment, and race/ethnicity,23Henderson K.H. Helmkamp L.J. Steiner J.F. et al.Relationship between social vulnerability indicators and trial participant attrition: findings from the HYVALUE trial.Circ Cardiovasc Qual Outcomes. 2022; 15e007709Crossref PubMed Scopus (2) Google Scholar but there is a need to understand additional factors leading to attrition in digital health interventions. Significant proportions of those enrolled in telemonitoring interventions drop out or minimally engage in the intervention. In a recent prospective study evaluating the relationship between steps captured by a personal activity tracker and risk of hospitalization in chronic liver disease, the device was not worn by patients (activity tracker–only group) on 46% of study inclusion days.4Lin F.-P. Bloomer P.M. Grubbs R.K. et al.Low daily step count is associated with a high risk of hospital admission and death in community-dwelling patients with cirrhosis.Clin Gastroenterol Hepatol. 2022; 20: 1813-1820.e2Abstract Full Text Full Text PDF PubMed Scopus (2) Google Scholar When patients participating in a remote patient monitoring study for ascites management were offered the option of extending their participation past 30 days, 40% decreased despite 94% of surveyed participants noting high feasibility.3Bloom P. Wang T. Marx M. et al.A smartphone app to manage cirrhotic ascites among outpatients: feasibility study.JMIR Med Inform. 2020; 8e17770Crossref PubMed Scopus (12) Google Scholar Reconciling high rates of attrition with overall positive poststudy satisfaction surveys is challenging. Surveys may not adequately capture the characteristics of the telemonitoring intervention that drive or deteriorate long-term engagement.11Fouquet S.D. Miranda A.T. Asking the right questions-human factors considerations for telemedicine design.Curr Allergy Asthma Rep. 2020; 20: 66Crossref PubMed Scopus (7) Google Scholar In addition, it is those with high digital literacy who were satisfied enough to complete the intervention whose opinions are collected; a scenario that introduces bias and masks drivers of digital health disparities. Similarly, those who decide to discontinue participation may not have the opportunity to provide their opinions, thereby having their experiences excluded from collection as well. High attrition despite positive patient-reported satisfaction implies bias (selection and measurement) in the feedback received, but also that the experiences using a telehealth intervention only partly explain the extent of engagement.24Boissy A. Patient engagement versus patient experience.N Engl J Med Catalyst. 2017; Google Scholar Reducing selection bias in patient satisfaction surveys necessitates gathering the experiences of those across the entire spectrum of study participation, including nonusers. In this manner, secondary analyses can be conducted to assess for potentially modifiable variables accounting for differential usage and engagement between groups. If vulnerable groups derive a comparatively lower benefit from a telehealth intervention, this should prompt changes that create a more equitable digital tool. Focus groups and validated digital literacy assessments8Ismond K.P. Eslamparast T. Farhat K. et al.Assessing patient proficiency with internet-connected technology and their preferences for e-health in cirrhosis.J Med Syst. 2021; 45: 72Crossref PubMed Scopus (3) Google Scholar also can be leveraged to identify factors that promoted or discouraged engagement, such as the degree of concordance between perceived digital literacy and the actual technological demands of the tool. Given the critical role of caregivers in cirrhosis care, they must be involved in these conversations because their perceptions of and experience with digital health interventions modify patient uptake and use of telemonitoring interventions.6Louissaint J. Lok A.S. Fortune B.E. et al.Acceptance and use of a smartphone application in cirrhosis.Liver Int. 2020; 40: 1556-1563Crossref PubMed Scopus (17) Google Scholar Telehealth satisfaction is also a broad and heterogeneous concept with numerous instruments. Use of validated instruments that capture key metrics of usability, acceptance, and overall satisfaction25Hajesmaeel-Gohari S. Khordastan F. Fatehi F. et al.The most used questionnaires for evaluating satisfaction, usability, acceptance, and quality outcomes of mobile health.BMC Med Inform Decis Mak. 2022; 22: 22Crossref PubMed Scopus (11) Google Scholar and how they relate to telehealth engagement is needed to advance telehepatology research. The promise of telehealth to provide equitable care remains achievable, however, this requires an intentional approach to the design and conduct of telehealth research (Figure 1). First, the barriers patients encounter to engage in telehealth-related research are not uniform and only can be understood and overcome adequately through the careful performance of a needs assessment. Second, each step of the recruitment process—study team composition, inclusion criteria selection, and recruitment targets—requires an intentional strategy to promote the creation of diverse study cohorts. Lastly, the spectrum of engagement in a telehealth intervention is wide, therefore surveying and obtaining feedback from all users and nonusers is important to monitor for disparities that may be inherent to the telehealth intervention. Together, these approaches move the field toward equitable participation in telehealth research and advances care for all.