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Patient and family contributions to improve the diagnostic process through the OurDX electronic health record tool: a mixed method analysis
  1. Sigall K Bell1,2,
  2. Kendall Harcourt1,
  3. Joe Dong1,
  4. Catherine DesRoches1,2,
  5. Nicholas J Hart3,
  6. Stephen K Liu4,
  7. Long Ngo1,5,
  8. Eric J Thomas6,7,
  9. Fabienne C. Bourgeois2,3
  1. 1 Department of General Medicine, Beth Israel Deaconess Medical Center, Boston, Massachusetts, USA
  2. 2 Department of Medicine, Harvard Medical School, Boston, Massachusetts, USA
  3. 3 Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA
  4. 4 Department of Medicine, Geisel School of Medicine at Dartmouth, Hanover, New Hampshire, USA
  5. 5 Department of Biostatistics, Harvard University T H Chan School of Public Health, Boston, Massachusetts, USA
  6. 6 Department of Internal Medicine, University of Texas John P and Katherine G McGovern Medical School, Houston, Texas, USA
  7. 7 UT Houston-Memorial Hermann Center for Healthcare Quality and Safety, Houston, Texas, USA
  1. Correspondence to Dr Sigall K Bell; sbell1{at}bidmc.harvard.edu

Abstract

Background Accurate and timely diagnosis relies on sharing perspectives among team members and avoiding information asymmetries. Patients/Families hold unique diagnostic process (DxP) information, including knowledge of diagnostic safety blindspots—information that patients/families know, but may be invisible to clinicians. To improve information sharing, we co-developed with patients/families an online tool called ‘Our Diagnosis (OurDX)’. We aimed to characterise patient/family contributions in OurDX and how they differed between individuals with and without diagnostic concerns.

Method We implemented OurDX in two academic organisations serving patients/families living with chronic conditions in three subspecialty clinics and one primary care clinic. Prior to each visit, patients/families were invited to contribute visit priorities, recent histories and potential diagnostic concerns. Responses were available in the electronic health record and could be incorporated by clinicians into visit notes. We randomly sampled OurDX reports with and without diagnostic concerns for chart review and used inductive and deductive qualitative analysis to assess patient/family contributions.

Results 7075 (39%) OurDX reports were submitted at 18 129 paediatric subspecialty clinic visits and 460 (65%) reports were submitted among 706 eligible adult primary care visits. Qualitative analysis of OurDX reports in the chart review sample (n=450) revealed that participants contributed DxP information across 10 categories, most commonly: clinical symptoms/medical history (82%), tests/referrals (54%) and diagnosis/next steps (51%). Participants with diagnostic concerns were more likely to contribute information on DxP risks including access barriers, recent visits for the same problem, problems with tests/referrals or care coordination and communication breakdowns, some of which may represent diagnostic blindspots.

Conclusion Partnering with patients and families living with chronic conditions through OurDX may help clinicians gain a broader perspective of the DxP, including unique information to coproduce diagnostic safety.

  • communication
  • diagnostic errors
  • healthcare quality improvement
  • patient-centred care
  • patient safety

Data availability statement

No data are available.

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Footnotes

  • X @EJThomas_safety, @fcbourgeois

  • Contributors SKB: research question development, methods design, data analysis, manuscript development and final approval. SKB is the guarantor for this work. KH: manuscript development and final approval. ZD: data extraction, methods design, data analysis, manuscript review and final approval. CMR: manuscript review and final approval. NH: data acquisition, data extraction, manuscript review and final approval. SKL: methods design, data acquisition, data extraction, manuscript review and final approval. LN: methods design, data analysis, manuscript review and final approval. EJT: research question development, methods design, data analysis, manuscript review and final approval. FB: research question development, methods design, data acquisition, data extraction, data analysis, manuscript development and final approval.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.