Partnering with Patients and Families to Improve Diagnostic Safety through the OurDX Tool: Effects of Race, Ethnicity, and Language Preference

Abstract

Background Patients and families at risk for health disparities may also be at higher risk for diagnostic errors but less likely to report them.

Objectives This study aimed to explore differences in race, ethnicity, and language preference associated with patient and family contributions and concerns using an electronic previsit tool designed to engage patients and families in the diagnostic process (DxP).

Methods Cross-sectional study of 5,731 patients and families presenting to three subspecialty clinics at an urban pediatric hospital May to December 2021 who completed a previsit tool, codeveloped and tested with patients and families. Prior to each visit, patients/families were invited to share visit priorities, recent histories, and potential diagnostic concerns. We used logistic regression to determine factors associated with patient-reported diagnostic concerns. We conducted chart review on a random subset of visits to review concerns and determine whether patient/family contributions were included in the visit note.

Results Participants provided a similar mean number of contributions regardless of patient race, ethnicity, or language preference. Compared with patients self-identifying as White, those self-identifying as Black (odds ratio [OR]: 1.70; 95% confidence interval [CI]: [1.18, 2.43]) or “other” race (OR: 1.48; 95% CI: [1.08, 2.03]) were more likely to report a diagnostic concern. Participants who preferred a language other than English were more likely to report a diagnostic concern than English-preferring patients (OR: 2.53; 95% CI: [1.78, 3.59]. There were no significant differences in physician-verified diagnostic concerns or in integration of patient contributions into the note based on race, ethnicity, or language preference.

Conclusion Participants self-identifying as Black or “other” race, or those who prefer a language other than English were 1.5 to 2.5 times more likely than their counterparts to report potential diagnostic concerns when proactively asked to provide this information prior to a visit. Actively engaging patients and families in the DxP may uncover opportunities to reduce the risk of diagnostic errors and potential safety disparities.

Keywords

error management and prevention - vulnerable populations - patient safety - patient–provider communication

Protection of Human and Animal Subjects

The study was approved by Boston Children's Hospital Institutional Review Board.

Publication History

Received: 02 March 2023

Accepted: 24 July 2023

Article published online:
15 November 2023

• References

• 1 Ibrahim SA, Pronovost PJ. Diagnostic errors, health disparities, and artificial intelligence: a combination for health or harm?. JAMA Health Forum 2021; 2 (09) e212430-e212430
• 2 Chin MH. Advancing health equity in patient safety: a reckoning, challenge and opportunity. BMJ Qual Saf 2020;
• 3 Woolf SH, Masters RK, Aron LY. Effect of the COVID-19 pandemic in 2020 on life expectancy across populations in the USA and other high income countries: simulations of provisional mortality data. BMJ 2021; 373 (1343) n1343
• 4 Rosen A, Carter D, Applebaum JR. et al. Critical care clinicians' experiences of patient safety during the COVID-19 pandemic. J Patient Saf 2022; 18 (08) e1219-e1225
• 5 Gandhi TK, Singh H. Reducing the risk of diagnostic error in the COVID-19 era. J Hosp Med 2020; 15 (06) 363-366
• 6 Joseph JW, Landry AM, Kennedy M. et al. Association of race and ethnicity with triage emergency severity index scores and total visit work relative value units for emergency department patients. JAMA Netw Open 2022; 5 (09) e2231769-e2231769
• 7 Bell SK, Dong J, Ngo L, McGaffigan P, Thomas EJ, Bourgeois F. Diagnostic error experiences of patients and families with limited English-language health literacy or disadvantaged socioeconomic position in a cross-sectional US population-based survey. BMJ Qual Saf 2022;
• 8 Wasserman M, Renfrew MR, Green AR. et al. Identifying and preventing medical errors in patients with limited English proficiency: key findings and tools for the field. J Healthc Qual 2014; 36 (03) 5-16
• 9 Divi C, Koss RG, Schmaltz SP, Loeb JM. Language proficiency and adverse events in US hospitals: a pilot study. Int J Qual Health Care 2007; 19 (02) 60-67
• 10 Schulson LB, Novack V, Folcarelli PH, Stevens JP, Landon BE. Inpatient patient safety events in vulnerable populations: a retrospective cohort study. BMJ Qual Saf 2020; 1-8
• 11 Michelson KA, McGarghan FLE, Patterson EE, Samuels-Kalow ME, Waltzman ML, Greco KF. Delayed diagnosis of serious paediatric conditions in 13 regional emergency departments. BMJ Qual Saf 2022; x: x
• 12 Khan A, Yin HS, Brach C. et al; Patient and Family Centered I-PASS Health Literacy Subcommittee. Association between parent comfort with English and adverse events among hospitalized children. JAMA Pediatr 2020; 174 (12) e203215-e203215
• 13 Balogh EP, Miller BT, Ball JR. et al. Improving Diagnosis in Health Care. National Academies Press (US); 2015.
• 14 Giardina TD, Haskell H, Menon S. et al. Learning from patients' experiences related to diagnostic errors is essential for progress in patient safety. Health Aff (Millwood) 2018; 37 (11) 1821-1827
• 15 Bell SK, Bourgeois F, DesRoches CM. et al. Filling a gap in safety metrics: development of a patient-centred framework to identify and categorise patient-reported breakdowns related to the diagnostic process in ambulatory care. BMJ Qual Saf 2022; 31 (07) 526-540
• 16 Bell SK, Bourgeois F, Dong J. et al. Patient identification of diagnostic safety blindspots and participation in “good catches” through shared visit notes. Milbank Q 2022; 100 (04) 1121-1165
• 17 Lam BD, Bourgeois F, Dong ZJ, Bell SK. Speaking up about patient-perceived serious visit note errors: patient and family experiences and recommendations. J Am Med Inform Assoc 2021; 28 (04) 685-694
• 18 Martino SC, Elliott MN, Mallett JS, Orr N, Gaillot S, Haviland AM. Speaking up and walking out: are vulnerable patients less likely to disagree with or change doctors?. Med Care 2018; 56 (09) 749-754
• 19 Schlesinger M, Mitchell S, Elbel B. Voices unheard: barriers to expressing dissatisfaction to health plans. Milbank Q 2002; 80 (04) 709-755 , iv–v
• 20 Khan A, Parente V, Baird JD. et al; Patient and Family Centered I-PASS SCORE Scientific Oversight Committee. Association of patient and family reports of hospital safety climate with language proficiency in the US. JAMA Pediatr 2022; 176 (08) 776-786
• 21 Blease CR, Bell SK. Patients as diagnostic collaborators: sharing visit notes to promote accuracy and safety. Diagnosis (Berl) 2019; 6 (03) 213-221
• 22 Bell SK, Folcarelli P, Fossa A. et al. Tackling ambulatory safety risks through patient engagement: what 10,000 patients and families say about safety-related knowledge, behaviors, and attitudes after reading visit notes. J Patient Saf 2021; 17 (08) e791-e799
• 23 Bell SK, Gerard M, Fossa A. et al. A patient feedback reporting tool for OpenNotes: implications for patient-clinician safety and quality partnerships. BMJ Qual Saf 2017; 26 (04) 312-322
• 24 Bell SK, Delbanco T, Elmore JG. et al. Frequency and types of patient-reported errors in electronic health record ambulatory care notes. JAMA Netw Open 2020; 3 (06) e205867-e205867
• 25 Giardina TD, Choi DT, Upadhyay DK. et al. Inviting patients to identify diagnostic concerns through structured evaluation of their online visit notes. J Am Med Inform Assoc 2022; 29 (06) 1091-1100
• 26 Fossa AJ, Bell SK, DesRoches C. OpenNotes and shared decision making: a growing practice in clinical transparency and how it can support patient-centered care. J Am Med Inform Assoc 2018; 25 (09) 1153-1159
• 27 Berger ZD, Brito JP, Ospina NS. et al. Patient centred diagnosis: sharing diagnostic decisions with patients in clinical practice. BMJ 2017; 359: j4218
• 28 Anderson MO, Jackson SL, Oster NV. et al. Patients typing their own visit agendas into an electronic medical record: pilot in a safety-net clinic. Ann Fam Med 2017; 15 (02) 158-161
• 29 Walker J, Leveille S, Kriegel G. et al. Patients contributing to visit notes: mixed methods evaluation of OurNotes. J Med Internet Res 2021; 23 (11) e29951
• 30 Kumah-Crystal YA, Stein PM, Chen Q. et al. Before-visit questionnaire: a tool to augment communication and decrease provider documentation burden in pediatric diabetes. Appl Clin Inform 2021; 12 (05) 969-978
• 31 Shucard H, Muller E, Johnson J. et al. Clinical use of an electronic pre-visit questionnaire soliciting patient visit goals and interim history: a retrospective comparison between safety-net and non-safety-net clinics. Health Serv Res Manag Epidemiol 2022 ;9:23333928221080336
• 32 Gordon NP, Hornbrook MC. Differences in access to and preferences for using patient portals and other eHealth technologies based on race, ethnicity, and age: a database and survey study of seniors in a large health plan. J Med Internet Res 2016; 18 (03) e50
• 33 Perzynski AT, Roach MJ, Shick S. et al. Patient portals and broadband internet inequality. J Am Med Inform Assoc 2017; 24 (05) 927-932
• 34 Veinot TC, Mitchell H, Ancker JS. Good intentions are not enough: how informatics interventions can worsen inequality. J Am Med Inform Assoc 2018; 25 (08) 1080-1088
• 35 Lyles CR, Sarkar U. Health literacy, vulnerable patients, and health information technology use: where do we go from here?. J Gen Intern Med 2015; 30 (03) 271-272
• 36 Sabin JA. Tackling implicit bias in health care. N Engl J Med 2022; 387 (02) 105-107
• 37 Bell SK, Bourgeois FC, Liu SK, Thomas E, Lowe B, Salmi L. Co-development of OurDX—an online tool to facilitate patient and family engagement in the diagnostic process. BMJ Opinion 2021 . Accessed March 3, 2023 at: https://blogs.bmj.com/bmj/2021/10/14/co-development-of-ourdx-an-online-tool-to-facilitate-patient-and-family-engagement-in-the-diagnostic-process/
• 38 Marshall A, Mondowney G, Sartini P. et al; Centers for Medicare & Medicaid Services (CMS), HHS. Medicare program; revisions to payment policies under the physician fee schedule and other revisions to part B for CY 2018; Medicare shared savings program requirements; and Medicare diabetes prevention program. Final rule. Fed Regist 2017; 82 (219) 52976-53371
• 39 LeLaurin JH, Nguyen OT, Thompson LA. et al. Disparities in pediatric patient portal activation and feature use. JAMIA Open 2021; 4 (03) ooab086
• 40 Bell SK, Dong ZJ, Desroches CM. et al. Partnering with patients and families living with chronic conditions to coproduce diagnostic safety through OurDX: a previsit online engagement tool. J Am Med Inform Assoc 2023; 30 (04) 692-702
• 41 El-Kareh R, Hasan O, Schiff GD. Use of health information technology to reduce diagnostic errors. BMJ Qual Saf 2013; 22 (Suppl. 02) ii40-ii51
• 42 Murphy DR, Meyer AND, Sittig DF, Meeks DW, Thomas EJ, Singh H. Application of electronic trigger tools to identify targets for improving diagnostic safety. BMJ Qual Saf 2019; 28 (02) 151-159
• 43 Bettenhausen JL, Richardson T, Herzig SJ, Hall M. Methodologic progress note: a clinician's guide to logistic regression. J Hosp Med 2021; 16 (11) 672-674
• 44 Delbanco T, Bell SK. Guilty, afraid, and alone–struggling with medical error. N Engl J Med 2007; 357 (17) 1682-1683
• 45 Mazor KM, Smith KM, Fisher KA, Gallagher TH. Speak up! Addressing the paradox plaguing patient-centered care. Ann Intern Med 2016; 164 (09) 618-619
• 46 Agency for Healthcare Research and Quality. Teach-back: intervention. U.S. Department of Health and Human Services; 2021. . Accessed September 10, 2022 at: https://www.ahrq.gov/patient-safety/reports/engage/interventions/teachback.html
• 47 Boissy A. How—and—why to listen until someone feels heard. 2018
• 48 Maletsky KD, Worsley D, Tran Lopez K. et al. Communication experiences of caregivers using a language other than English on inpatient services. Hosp Pediatr 2023; 13 (06) 471-479
• 49 Rojas CR, Chamberlain JM, Cohen JS. et al. Undertriage for children with caregivers preferring languages other than English. Pediatrics 2023; 151 (06) e2022059386
• 50 Maina IW, Belton TD, Ginzberg S, Singh A, Johnson TJ. A decade of studying implicit racial/ethnic bias in healthcare providers using the implicit association test. Soc Sci Med 2018; 199: 219-229
• 51 Amelung D, Whitaker KL, Lennard D. et al. Influence of doctor-patient conversations on behaviours of patients presenting to primary care with new or persistent symptoms: a video observation study. BMJ Qual Saf 2020; 29 (03) 198-208
• 52 Sokol-Hessner L, Kane GJ, Annas CL. et al. Development of a framework to describe patient and family harm from disrespect and promote improvements in quality and safety: a scoping review. Int J Qual Health Care 2019; 31 (09) 657-668
• 53 Sun M, Oliwa T, Peek ME, Tung EL. Negative patient descriptors: documenting racial bias in the electronic health record. Health Aff (Millwood) 2022; 41 (02) 203-211
• 54 Himmelstein G, Bates D, Zhou L. Examination of stigmatizing language in the electronic health record. JAMA Netw Open 2022; 5 (01) e2144967-e2144967
• 55 Beach MC, Saha S, Park J. et al. Testimonial injustice: linguistic bias in the medical records of Black patients and women. J Gen Intern Med 2021; 36 (06) 1708-1714
• 56 P Goddu A, O'Conor KJ, Lanzkron S. et al. Do words matter? Stigmatizing language and the transmission of bias in the medical record. J Gen Intern Med 2018; 33 (05) 685-691
• 57 Kelly JF, Westerhoff CM. Does it matter how we refer to individuals with substance-related conditions? A randomized study of two commonly used terms. Int J Drug Policy 2010; 21 (03) 202-207
• 58 Centers for Medicare and Medicaid Services. HCAHPS: patients' perspectives of care survey. CMS.gov. 2013 . Accessed May 29, 2020 at: http://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/HospitalQualityInits/HospitalHCAHPS.html
• 59 Forcino RC, Barr PJ, O'Malley AJ. et al. Using CollaboRATE, a brief patient-reported measure of shared decision making: results from three clinical settings in the United States. Health Expect 2018; 21 (01) 82-89
• 60 Gwaltney CJ, Shields AL, Shiffman S. Equivalence of electronic and paper-and-pencil administration of patient-reported outcome measures: a meta-analytic review. Value Health 2008; 11 (02) 322-333
• 61 Clark CR, Akdas Y, Wilkins CH. et al. TechQuity is an imperative for health and technology business: let's work together to achieve it. J Am Med Inform Assoc 2021; 28 (09) 2013-2016
• 62 Rhee K, Dankwa-Mullan I, Brennan V, Clark C. What is techquity?. J Health Care Poor Underserved 2021; 32 (02) xiii-xviii
• 63 Pew Research Center. Internet/broadband fact sheet. 2021 Accessed April 20, 2023 at: https://www.pewresearch.org/internet/fact-sheet/internet-broadband/
• 64 van Kessel R, Wong BLH, Clemens T, Brand H. Digital health literacy as a super determinant of health: More than simply the sum of its parts. Internet Interv 2022; 27: 100500
• 65 Rodriguez JA, Clark CR, Bates DW. Digital health equity as a necessity in the 21st century cures act era. JAMA 2020; 323 (23) 2381-2382
• 66 Johnson C, Richwine C, Patel V. Individuals' access and use of patient portals and smartphone health apps, 2020; 2021. Accessed May 16, 2023 at: https://www.healthit.gov/data/data-briefs/individuals-access-and-use-patient-portals-and-smartphone-health-apps-2020
• 67 Bush RA, Vemulakonda VM, Richardson AC, Deakyne Davies SJ, Chiang GJ. Providing access: differences in pediatric portal activation begin at patient check-in. Appl Clin Inform 2019; 10 (04) 670-678
• 68 Payne TH, Lehmann CU, Zatzick AK. The voice of the patient and the electronic health record. Appl Clin Inform 2023; 14 (02) 254-257
• 69 Irizarry T, DeVito Dabbs A, Curran CR. Patient portals and patient engagement: a state of the science review. J Med Internet Res 2015; 17 (06) e148