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Clinical Documentation as a Source of Information for Patients – Possibilities and Limitations

Clinical Documentation as a Source of Information for Patients – Possibilities and Limitations. Torunn Wibe, Mirjam Ekstedt , Ragnhild Hellesø, Karl Øyri and Laura Slaughter. Background. Recent legislation in many countries has given patients the right to access their own patient records

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Clinical Documentation as a Source of Information for Patients – Possibilities and Limitations

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  1. Clinical Documentation as a Source of Information for Patients – Possibilities and Limitations Torunn Wibe, Mirjam Ekstedt, Ragnhild Hellesø, Karl Øyri and Laura Slaughter

  2. Background • Recent legislation in many countries has given patients the right to access their own patient records • Part of a broader trend in health care, in which the population has a higher level of education and the ability to access health information on the Internet - contributing to more multifaceted and less paternalistic patient-provider relationship Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  3. Background • Health care professionals have tended to be sceptical of the benefits patients might receive from reading their records • Hospital routines for giving access or handing over copies to patients might in some cases be experienced as an obstacle for patients Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  4. Purpose of the study We wanted to investigatepatients’ experiences of understandability, usefulness (whether the patients’ purposes in requesting a copy were fulfilled), as well as their experiences in relation to the accessibility of clinical documentation from a hospital stay Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  5. Methods and material • We combined a mail survey and a face-to-face interview study, including patients who had requested a paper copy of their EPR at two University hospitals in Norway • The material consisted of 108 answers to the survey and 17 individual face-to-face interviews Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  6. Analysis Descriptive statistics were used to analyse the findings of the survey The analysis of the interviews was guided by qualitative content analysis Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  7. Results 108 survey respondents • 88% women and 12% men • Aged between 20 and 78 (mean age 43, median 39) • 75% had education beyond high school • 20% were health care professionals Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  8. Results 17 individual interviews • 16 women and one man • Aged between 28 and 67 (mean age 49, median 48) • 11 out of the 17 interviewees having an education beyond high school Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  9. Survey Results Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  10. Survey Results Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  11. Survey Results Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  12. Survey Results Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  13. Survey Results - understandability Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  14. Findings from interviews • Understanding from thecontext “Of course there are some expressions (that I don’t understand), but I understand it from the context […] In any case, I understand the professional terms concerning what is relevant for me.” Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  15. Findings from interviews Strictroutines for thereleaseofrecords “I’m not saying that you should force the patient record on people, but it should have been easier to get it when you asked for it.” Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  16. Discussion Understandability • Patientsareinterested in themedicalaspectsoftheircondition • Patients’ maininterestseems to lie in themedical part oftherecord – althoughnursing notes arefoundeasier to understand • The dischargesummary is the «most popular» single part oftherecordwithalso a relativelyhigh score onperceivedunderstandability Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  17. Discussion Usefulness • Got their questions answered • Could make sure thatthe GP or otherhealthcareprovidersreceivednecessaryinformation from the hospital Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  18. Limitations • Lowresponse rate • Self-selecting sample • High educationlevel • Unequalparticipationofgenders Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  19. Conclusion • Some patients are still afraid of seeming suspicious or displeased when requesting a copy of clinical documentation • Actively offer patients the chance to view their clinical documentation to a larger extent than what is done so far Wibe, Ekstedt, Hellesø, Øyri and Slaughter

  20. Thankyou for yourattention. Questions? Comments? torunn.wibe@rr-research.no Wibe, Ekstedt, Hellesø, Øyri and Slaughter

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