Achieving Diagnostic Excellence: Roadmaps to Develop and Use Patient-Reported Measures With an Equity Lens

Document Type : Original Article

Authors

1 Johns Hopkins University School of Nursing, Baltimore, MD, USA

2 Division of General Internal Medicine, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA

3 Mothers Against Medical Error, Columbia, SC, USA

4 Department of Health Policy and Management, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA

Abstract

Background 
Diagnostic excellence refers to the optimal process to attain an accurate and precise explanation about a patient’s condition and incorporates the perspectives of patients and their care partners. Patient-reported measures (PRMs), designed to capture patient-reported information, have potential to contribute to achieving diagnostic excellence. We aimed to craft a set of roadmaps illustrating goals and guiding the development of PRMs for diagnostic excellence (“Roadmaps”).

Methods 
We used iterative inputs from environmental literature scans, expert consultations, and patient voice and employed human-centred design (HCD) and equity-focused road-mapping. The culminating activity of these approaches was an Expert Convening.

Results 
Use of PRMs can achieve multiple goals for diagnostic excellence, including but not limited to: (1) PRMs for diagnostic continuity, (2) diagnostic PRM alerts, (3) PRM-based quality improvement, (4) PRMs for research, (5) PRMs for routine screening, (6) PRM-based diagnostic excellence population-level patterns, and (7) PRMs supporting patient storytelling. Equity is considered as a cross-cutting goal. Altogether these and future goals support operationalising a vision of patient-reported diagnostic excellence. Roadmaps were developed as a dynamic tool to illustrate PRMs in relation to specific steps with feedback loops to accomplish goals, anticipated timeframes (8-15 years), synergies to foster, and challenges to overcome. Roadmaps are practical in their following PRMs through the stages of development, endorsement, implementation and scaling, and acting upon those measures. Timeframe estimates assume immediate transitions between these stages and no acceleration through incentives and active coordination.

Conclusion 
PRMs for diagnostic excellence have potential to connect patient perspectives, equity, and achievable goals. Roadmaps offer a design approach to enable coordinating measurement activities among diverse stakeholders. Roadmaps also highlight versatility in ways patient-reported information can be collected and used, from clinical settings to public health contexts. Patient-reported diagnostic excellence cannot be established as a solely top-down endeavour, but inherently benefits from bottom-up approaches.

Keywords


  1. Yang D, Fineberg HV, Cosby K. Diagnostic excellence. JAMA. 2021;326(19):1905-1906. doi:1001/jama.2021.19493
  2. McDonald KM, Bryce CL, Graber ML. The patient is in: patient involvement strategies for diagnostic error mitigation. BMJ Qual Saf. 2013;22(Suppl 2):ii33-ii39. doi:1136/bmjqs-2012-001623
  3. Berwick DM. Diagnostic excellence through the lens of patient-centeredness. JAMA. 2021;326(21):2127-2128. doi:1001/jama.2021.19513
  4. Lewis S, Broom A, Kenny K, Kirby E. Cancer caregivers' experiences of prognosis in Australia: a qualitative interview study. BMJ Open. 2020;10(1):e032361. doi:1136/bmjopen-2019-032361
  5. Wolff JL, Aufill J, Echavarria D, et al. Sharing in care: engaging care partners in the care and communication of breast cancer patients. Breast Cancer Res Treat. 2019;177(1):127-136. doi:1007/s10549-019-05306-9
  6. Schlesinger M, Grob R, Shaller D. Using patient-reported information to improve clinical practice. Health Serv Res. 2015;50(Suppl 2):2116-2154. doi:1111/1475-6773.12420
  7. Williams K, Thompson C. Patient-Reported Outcome Measures: Stakeholder Interviews. 2018. https://www.safetyandquality.gov.au/sites/default/files/migrated/PROMs-stakeholder-interviews-report-2018.pdf.
  8. Burstin H, Cosby K. Measuring performance of the diagnostic process. JAMA. 2022;328(2):143-144. doi:1001/jama.2022.10166
  9. Franklin P, Chenok K, Lavalee D, et al. Framework to guide the collection and use of patient-reported outcome measures in the learning healthcare system. EGEMS (Wash DC). 2017;5(1):17. doi:5334/egems.227
  10. Snyder CF, Jensen RE, Segal JB, Wu AW. Patient-reported outcomes (PROs): putting the patient perspective in patient-centered outcomes research. Med Care. 2013;51(8 Suppl 3):S73-S79. doi:1097/MLR.0b013e31829b1d84
  11. Calvert M, Thwaites R, Kyte D, Devlin N. Putting patient-reported outcomes on the 'big data roadmap'. J R Soc Med. 2015;108(8):299-303. doi:1177/0141076815579896
  12. Rusch A, DeCamp LM, Liebrecht CM, et al. A roadmap to inform the implementation of evidence-based collaborative care interventions in communities: insights from the Michigan mental health integration partnership. Front Public Health. 2021;9:655999. doi:3389/fpubh.2021.655999
  13. National Quality Forum. Improving Diagnostic Quality and Safety/Reducing Diagnostic Error: Measurement Considerations. Final Report. Washington, DC: National Quality Forum; 2020. https://www.qualityforum.org/Publications/2020/10/Reducing_Diagnostic_Error__Measurement_Considerations_-_Final_Report.aspx.
  14. Addario B, Geissler J, Horn MK, et al. Including the patient voice in the development and implementation of patient-reported outcomes in cancer clinical trials. Health Expect. 2020;23(1):41-51. doi:1111/hex.12997
  15. Canadian Institute for Health Information (CIHI). Patient-Centred Measurement and Reporting in Canada: Launching the Discussion Toward a Future State. Ottawa: CIHI; 2017:1-46. https://www.cihi.ca/sites/default/files/document/visioning-day-paper-en-web.pdf. Accessed July 19, 2021.
  16. Galper A, Shamai-Rosler O, Stanger V, Zimlichman E. PRO (patient reported outcomes) implementation: from vision to reality. Stud Health Technol Inform. 2019;264:1839-1840. doi:3233/shti190674
  17. Øvretveit J, Zubkoff L, Nelson EC, Frampton S, Knudsen JL, Zimlichman E. Using patient-reported outcome measurement to improve patient care. Int J Qual Health Care. 2017;29(6):874-879. doi:1093/intqhc/mzx108
  18. National Quality Forum. Patient-Reported Outcomes: Best Practices on Selection and Data Collection. Final Technical Report. Washington, DC; National Quality Forum; 2020. https://www.qualityforum.org/Publications/2020/09/Patient-Reported_Outcomes__Best_Practices_on_Selection_and_Data_Collection_-_Final_Technical_Report.aspx.
  19. Ku B, Lupton E. Health Design Thinking. Cambridge, MA: MIT Press; 2020.
  20. Ratinam M, Fawcett P, Turner S. Human-Centred Design Playbook. 2020. https://www.vic.gov.au/sites/default/files/2020-06/DDI_HCD%20Playbook_v1.4.pdf.
  21. Vechakul J, Shrimali BP, Sandhu JS. Human-centered design as an approach for place-based innovation in public health: a case study from Oakland, California. Matern Child Health J. 2015;19(12):2552-2559. doi:1007/s10995-015-1787-x
  22. Institute of Medicine (US) Committee on Future Directions for the National Healthcare Quality and Disparities Reports. Future directions for the national healthcare quality and disparities reports. Washington, DC: National Academies Press (US); 2010.
  23. Lewis CL, Langhinrichsen-Rohling J, Selwyn CN, Lathan EC. Once BITTEN, twice shy: an applied trauma-informed healthcare model. Nurs Sci Q. 2019;32(4):291-298. doi:1177/0894318419864344
  24. Schmidt T, Valuck T, Perkins B, et al. Improving patient-reported measures in oncology: a payer call to action. J Manag Care Spec Pharm. 2021;27(1):118-126. doi:18553/jmcp.2020.20313
  25. McDonald KM. Achieving equity in diagnostic excellence. JAMA. 2022;327(20):1955-1956. doi:1001/jama.2022.7252
  26. Cruz Rivera S, Liu X, Hughes SE, et al. Embedding patient-reported outcomes at the heart of artificial intelligence health-care technologies. Lancet Digit Health. 2023;5(3):e168-e173. doi:1016/s2589-7500(22)00252-7
  27. Geraedts M, Krause S, Schneider M, Ortwein A, Leinert J, de Cruppé W. Patient safety in ambulatory care from the patient's perspective: a retrospective, representative telephone survey. BMJ Open. 2020;10(2):e034617. doi:1136/bmjopen-2019-034617
  28. 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(7):526-540. doi:1136/bmjqs-2021-013672
  29. Ricci-Cabello I, Gangannagaripalli J, Mounce LTA, Valderas JM. Identifying factors leading to harm in English general practices: a mixed-methods study based on patient experiences integrating structural equation modeling and qualitative content analysis. J Patient Saf. 2021;17(1):e20-e27. doi:1097/pts.0000000000000669
  30. Vaillancourt S, Cullen JD, Dainty KN, et al. PROM-ED: development and testing of a patient-reported outcome measure for emergency department patients who are discharged home. Ann Emerg Med. 2020;76(2):219-229. doi:1016/j.annemergmed.2019.12.023
  31. Dukhanin V, McDonald KM, Gonzalez N, Gleason KT. Patient reasoning: patients' and care partners' perceptions of diagnostic accuracy in emergency care. Med Decis Making. 2024;44(1):102-111. doi:1177/0272989x231207829
  32. Schlesinger M, Grob R, Gleason K, et al. Patient Experience as a Source for Understanding the Origins, Impact, and Remediation of Diagnostic Errors. Volume 1: Why Patient Narratives Matter. Rockville, MD: Agency for Healthcare Research and Quality; 2023.
  33. 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(6):1091-1100. doi:1093/jamia/ocac036
  34. Patients for Patient Safety US. Project PIVOT. https://www.pfps.us/project-pivot. Accessed March 19, 2024.
  35. National Quality Forum. Advancing Measurement of Diagnostic Excellence for Better Healthcare. https://www.qualityforum.org/ProjectDescription.aspx?projectID=98290. Accessed March 22, 2024.
  36. Collins FS, Wilder EL, Zerhouni E. Funding transdisciplinary research. NIH roadmap/common fund at 10 years. Science. 2014;345(6194):274-276. doi:1126/science.1255860
  37. Cella D, Yount S, Rothrock N, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH roadmap cooperative group during its first two years. Med Care. 2007;45(5 Suppl 1):S3-S11. doi:1097/01.mlr.0000258615.42478.55
  • Receive Date: 27 March 2023
  • Revise Date: 19 April 2024
  • Accept Date: 29 May 2024
  • First Publish Date: 01 June 2024