Provocations for Reimagining Informatics Approaches to Health Equity

Rupa S. Valdez; Jessica S. Ancker; Tiffany C. Veinot

doi:10.1055/s-0042-1742514

Yearbook of Medical Informatics, Table of Contents

CC BY-NC-ND 4.0 · Yearb Med Inform 2022; 31(01): 015-019
DOI: 10.1055/s-0042-1742514

Keynote

Provocations for Reimagining Informatics Approaches to Health Equity

Rupa S. Valdez

¹Department of Public Health Sciences, Department of Engineering Systems and Environment, University of Virginia, Charlottesville, Virginia, USA

,

Jessica S. Ancker

²Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, Tennessee, USA

,

Tiffany C. Veinot

³School of Information and Department of Health Behavior and Health Education, School of Public Health, University of Michigan, Ann Arbor, Michigan, USA

› Author Affiliations

Abstract

Summary

As the informatics community commits to the goal of advancing health equity, it is essential that we openly critique our current approaches and reimagine the ways in which we design, implement, evaluate, and advocate for policies related to informatics interventions. In this paper, we present five provocations as a starting point for building more conscientious informatics practice in service of this goal: 1) Health informatics interventions can create an “illusion of impactful action” without significant material benefits for marginalized patients, families, and communities; 2) Health informatics interventions target the wrong stakeholders, the wrong processes, and the wrong technologies to achieve equity; 3) Informaticians must conceptualize health literacy and other factors shaping patients' experiences as a system-level rather than individual-level characteristic; 4) Informatics interventions wrongly assume that interacting contextual factors can be meaningfully captured by over-simplified structured variables; and 5) Informatics interventions often specify the wrong system boundaries and solution space. We further assert that drastic shifts in our current practices will allow us to honor our claims of valuing patient-centered approaches, especially for marginalized communities.

Keywords

Health disparity - health equity - health informatics - social determinants of health - community engagement

Full Text

References

References
1 Grossman LV, Masterson Creber RM, Benda NC, Wright D, Vawdrey DK, et al. Interventions to increase patient portal use in vulnerable populations: a systematic review. J Am Med Inform Assoc 2019 Aug 1;26(8-9):55-870.
2 Dixit N, Van Sebille Y, Crawford GB, Ginex PK, Ortega PF, Chan RJ. Disparities in telehealth use: How should the supportive care community respond? Support Care Cancer 2022 Feb;30(2):1007-10.
3 Health Resources & Services Administration. Health equity in telehealth [Internet]. 2022 [cited 2022 Jun 3]. Available from: https://telehealth.hhs.gov/providers/health-equity-in-telehealth/
4 Zhao JY, Song B, Anand E, Schwartz D, Panesar M, Jackson GP, et al. Barriers, Facilitators, and Solutions to Optimal Patient Portal and Personal Health Record Use: A Systematic Review of the Literature. AMIA Annu Symp Proc 2018 Apr 16;2017:1913-22.
5 Valdez RS, Rogers CC, Claypool H, Trieshmann L, Frye O, Wellbeloved-Stone C, et al. Ensuring full participation of people with disabilities in an era of telehealth. J Am Med Inform Assoc 2021 Feb 15;28(2):389-92.
6 Thompson MJ, Reilly JD, Valdez RS. Work system barriers to patient, provider, and caregiver use of personal health records: A systematic review. Appl Ergon 2016 May;54:218-42.
7 Veinot TC, Clarke P, Romero D, Buis L, Dillahunt T, Vydiswaran V, et al. Equitable Research PRAXIS: A Framework for Health Informatics Methods. Int Med Inform Assoc IMIA Yearb 2022:307-16.
8 Medicare.gov. Find Healthcare Providers: Compare Care Near You [Internet]. [cited 2022 Jun 3]. Available from: https://www.medicare.gov/care-compare/
9 Centers for Medicare & Medicaid Services. Hospital Compare [Internet]. [cited 2022 Jun 3]. Available from: https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/HospitalCompare
10 Veinot TC, Bosk EA, Unnikrishnan KP, Iwashyna TJ. Revenue, relationships and routines: the social organization of acute myocardial infarction patient transfers in the United States. Soc Sci Med 2012 Nov;75(10):1800-10.
11 Levine GN, Bates ER, Blankenship JC, Bailey SR, Bittl JA, Cercek B, et al; American College of Cardiology Foundation; American Heart Association Task Force on Practice Guidelines; Society for Cardiovascular Angiography and Interventions. 2011 ACCF/AHA/SCAI Guideline for Percutaneous Coronary Intervention. A report of the American College of Cardiology Foundation/American Heart Association Task Force on Practice Guidelines and the Society for Cardiovascular Angiography and Interventions. J Am Coll Cardiol 2011 Dec 6;58(24):e44-122.
12 U.S. Department of Health and Human Services. Social Determinants of Health - Healthy People 2030 [Internet]. [cited 2022 Jun 3]. Available from: https://health.gov/healthypeople/priority-areas/social-determinants-health
13 Veinot TC, Ancker JS, Cole-Lewis H, Mynatt ED, Parker AG, Siek KA, et al. Leveling Up: On the Potential of Upstream Health Informatics Interventions to Enhance Health Equity. Med Care 2019 Jun;57 Suppl 6 Suppl 2:S108-S114.
14 Veinot TC, Ancker JS, Bakken S. Health informatics and health equity: improving our reach and impact. J Am Med Inform Assoc 2019 Aug 1;26(8-9):689-95.
15 Veinot TC, Mitchell H, Ancker JS. Good intentions are not enough: how informatics interventions can worsen inequality. J Am Med Inform Assoc 2018 Aug 1;25(8):1080-8.
16 Iott BE, Loveluck J, Benton A, Golson L, Kahle E, Lam J, et al. The impact of stigma on HIV testing decisions for gay, bisexual, queer and other men who have sex with men: a qualitative study. BMC Public Health 2022 Mar 9;22(1):471.
17 Valdez RS, Holden RJ, Novak LL, Veinot TC. Transforming consumer health informatics through a patient work framework: connecting patients to context. J Am Med Inform Assoc 2015 Jan;22(1):2-10.
18 Rogers C, Johnson J, Nueslein B, Edmunds D, Valdez RS. “I Love Fruit But I Can't Afford It”: Using Participatory Action Research to Develop Community-Based Initiatives to Mitigate Challenges to Chronic Disease Management in an African American Community Living in Public Housing. J Racial Ethn Health Disparities 2018 Dec;5(6):1315-27.
19 Health literacy: report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA 1999 Feb 10;281(6):552-7.
20 Parker RM, Ratzan SC, Lurie N. Health literacy: a policy challenge for advancing high-quality health care. Health Aff (Millwood) 2003 Jul-Aug;22(4):147-53.
21 Nielsen-Bohlman L, Panzer AM, Kindig DA, editors. Health Literacy: A Prescription to End Confusion [Internet]. 2004 [cited 2022 Jun 3]. Available from: https://nap.nationalacademies.org/catalog/10883/health-literacy-a-prescription-to-end-confusion
22 Kutner M, Greenberg E, Jin Y, Paulsen C. The Health Literacy of America's Adults: Results from the 2003 National Assessment of Adult Literacy [Internet]. Washington, DC: National Center for Education Statistics; 2006 Sep. Available from: https://nces.ed.gov/pubsearch/pubsinfo.asp?pubid=2006483
23 Davis TC, Federman AD, Bass PF 3rd, Jackson RH, Middlebrooks M, Parker RM, et al. Improving patient understanding of prescription drug label instructions. J Gen Intern Med 2009 Jan;24(1):57-62.
24 Sharko M, Sharma MM, Benda NC, Chan M, Wilsterman E, Liu GL, et al. Optimizing comprehension of quantities in medication instructions: A systematic review. Patient Educ Couns (In Press)
25 Ancker JS, Kaufman D. Rethinking health numeracy: a multidisciplinary literature review. J Am Med Inform Assoc 2007 Nov-Dec;14(6):713-21.
26 Department of Health and Human Services. Solicitation for Written Comments on an Updated Health Literacy Definition for Healthy People 2030 [Internet]. Fed. Regist. 2019 [cited 2022 Jun 3]. Available from: https://www.federalregister.gov/documents/2019/06/04/2019-11571/solicitation-for-written-comments-on-an-updated-health-literacy-definition-for-healthy-people-2030
27 Valdez RS, Gibbons MC, Siegel ER, Kukafka R, Brennan PF. Designing consumer health IT to enhance usability among different racial and ethnic groups within the United States. Health and Technology 2012;2(4):25-233.
28 Center for Health Equity Advancement. Health Disparities and Social Determinants of Health [Internet]. [cited 2022 Jun 6]. Available from: https://www.chea.upenn.edu/health-disparities-and-social-determinants-of-health/
29 Cartier Y, Gottlieb L. The prevalence of social care in US health care settings depends on how and whom you ask. BMC Health Serv Res 2020 May 29;20(1):481.
30 National Academies of Sciences and Engineering. Integrating Social Care into the Delivery of Health Care: Moving Upstream to Improve the Nation's Health [Internet]. 2019 [cited 2022 Jun 3]. Available from: https://nap.nationalacademies.org/catalog/25467/integrating-social-care-into-the-delivery-of-health-care-moving
31 Timmermans S, Epstein S. A world of standards but not a standard world: Toward a sociology of standards and standardization. Annu Rev Sociol 2010;36(1):69-89.
32 Espeland WN, Stevens ML. Commensuration as a social process. Annu Rev Sociol 1998;24:313-43.
33 Senteio C, Adler-Milstein J, Richardson C, Veinot T. Psychosocial information use for clinical decisions in diabetes care. J Am Med Inform Assoc 2019;26:813–24.
34 Charon R. Narrative Medicine A Model for Empathy, Reflection, Profession, and Trust. JAMA 2001;286:1897–902.
35 Senteio C, Adler-Milstein J, Richardson C, Veinot T. Psychosocial information use for clinical decisions in diabetes care. J Am Med Inform Assoc 2019 Aug 1;26(8-9):813-24.
36 Senteio C, Veinot T, Adler-Milstein J, Richardson C. Physicians' perceptions of the impact of the EHR on the collection and retrieval of psychosocial information in outpatient diabetes care. Int J Med Inform 2018 May;113:9-16.
37 Unertl KM, Schaefbauer CL, Campbell TR, Senteio C, Siek KA, Bakken S, et al. Integrating community-based participatory research and informatics approaches to improve the engagement and health of underserved populations. J Am Med Inform Assoc 2016 Jan;23(1):60-73.
38 Valdez RS, Edmunds DS. Reimagining community-based research and action in human factors: A dialogue across disciplines. In: Advancing diversity, inclusion, and social justice through human systems engineering. CRC Press; 2019. p. 267-76.
39 Petersen C, Austin RR, Backonja U, Campos H, Chung AE, Hekler EB, et al. Citizen science to further precision medicine: from vision to implementation. JAMIA open 2019 Dec 3;3(1):2-8.