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

MedInfo August 21st 2013 Wibe, Ekstedt, Hellesø, Øyri and 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

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


Purpose of the study

We wanted to investigate patients’ 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


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


Analysis

Descriptive statistics were used to analyse the findings of the survey

The analysis of the interviews was guided by qualitative content analysis


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


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


Survey Results

Why did you ask for a copy of your patient record?

To get more detailed information on my health 57 52.8

To play a more active role in my own health care 35 32.4

To be able to explain my health situation to others 34 31.5

To check that the patient record (EPR) is correct 31 29.0

To give a copy to my general practitioner (GP) 22 20.4


Survey Results


Which parts of the record did you specifically ask for?

Entire EPR88 81.5

Discharge summary29 26.9

Physician notes15 13.9

Nursing notes 5 4.6Lab test results 5 4.6Imaging results 5 4.6Prescribed medications summary 2 1.9

Which parts of the record did you specifically ask for?

Entire EPR 88 81.5

Discharge summary 29 26.9

Physician notes 15 13.9Nursing notes 5 4.6Lab test results 5 4.6Imaging results 5 4.6Prescribed medications summary 2 1.9

Survey Results


What kinds of information were you looking for?More details about the treatments I will or have received 62 57.4More detailed info on my diagnosis 53 49.1General oversight/Nothing in particular 32 29.6Details about my stay in the hospital 30 27.8Complications and quality of life 26 24.1Tests that have been or will be done 21 19.4Future outlook (course of sickness and results) 19 17.6Insurance or social security benefits 17 15.7Other (specify): "what happened during birth", "what was done", "evidence of negligence", "future outlook" 16 14.8

Survey Results


Did you get an answer to the questions you had when you asked to read your patient record?

Yes, got answers 92 85.2

No, did not get answers 13 12.0

Survey Results - understandability


Section of the patient record M Std. N

Nursing notes 3.8 1.2 54

Physician notes 3.4 1.2 91

Lab test results 3.0 1.4 56

Discharge summary 3.7 1.1 87

Imaging results 3.0 1.4 41

Prescribed medications summary 3.8 1.2 29

Findings from interviews

• Understanding from the context

“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.”


Findings from interviews

Strict routines for the release of records

“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.”


Discussion

Understandability• Patients are interested in the medical aspects of their

condition• Patients’ main interest seems to lie in the medical

part of the record – although nursing notes are found easier to understand

• The discharge summary is the «most popular» single part of the record with also a relatively high score on perceived understandability


Discussion

Usefulness• Got their questions answered• Could make sure that the GP or other health

care providers received necessary information from the hospital


Limitations

• Low response rate• Self-selecting sample• High education level• Unequal participation of genders


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


Thank you for your attention.

Questions? Comments?

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clinical documentation as a source of information for patients – possibilities and limitations

Documents

limitationstorunn wibe

karl yri

ragnhild helles

mirjam ekstedt

countries patients

health information

patients possibilities

patients purposes