Experiences from using patient accessible electronic health records - a qualitative study within Sámi mental health patients in Norway

ABSTRACT

Patient accessible electronic health records (PAEHR) has been implemented in the Norwegian public health care system since 2015. In Norway the indigenous minority is the Sámi people. Studies show that lingual and cultural competence of the health professionals can affect Sámi patients’ user satisfaction with the health care system. A qualitative study was conducted to gather experience of PAEHR in mental health care for Sámi patients. Semi-structured interviews were conducted with five participants, who self-identified as Sámi, had experience as patients in mental health care, and had used the PAEHR service. The material was transcribed and coded and categorised using the framework method. Finally, the data was analysed using theoretic thematic analysis. The participants reported that the service was particularly helpful in identifying misunderstandings caused by different cultural perceptions between the patient and the therapist. Difficulties with Norwegian as written language in the journal were uncovered. The participants were ambiguous on whether cultural characteristics scold be recorded in the journal.

KEYWORDS:

• PAEHR
• Sámi
• patient empowerment
• mental health
• indigenous people
• culture

Semi-structured interview guide

(REC START)

Note for interviewer

No disease specific information!

No identifiable information!

Is it first-hand or second-hand experiences?

Background

Age (age group: under 20, 20-30, 30-40, 40-50, 50-60, 60-70,> 70)

Location (Where are you from? Resident area?)

Background\identity\upbringing\culture (North Sámi, South Sámi, Lule Sámi)

Language (mother tongue): Do you understand Sami? Did you have the opportunity to receive Sami language training when you went to school?

PAEHR (use)

(“All patients now you the opportunity to log in to helsenorge.no, have you ever logged in”.)

Experience with and the perception of the PAEHR service:

• Do you use the journal access service? How much/often?

• Where did you hear about the journal access service?

• When do you use it? (after each contact with the health service?)

• How do you experience reading your medical records from psychiatry online?

Mental health

Experience from mental health care: Admission or consultations? How many years?

Relationship to health care

• Sami health personnel vs Norwegian health personnel. Have you experienced any differences in being treated by Sami/Norwegian personnel? (language)

• Would you have preferred that the medical conversation had taken place in Sami, and that the medical record had been written in Sami?

• Would you like your language and cultural background to be noted in the journal?

• How did your cultural background play into your relationship with healthcare professionals?

• How did you reading your journal online affect your overall relationship with the healthcare services?

• How did reading the journal affect your perception of the treatment process? (inside)

Contents of the journal

• Have you experienced that topics you have talked about in connection with your culture are omitted from the journal? (eg alternative medicine, family relationships, outlook on life)

• How did you feel that it was included/not included?

• Have you experienced that you have failed to tell something to your therapist because you do not want it to be written in the medical record?

• If yes: What topics have you not told your therapist about?

• Have you yourself asked the therapist not to include topics that are discussed during the treatment in the medical record? (Issues around relatives, private zone, view of life)

• What kind of topics?

• Why did you not want it recorded in the journal?

• Have you reading the medical record and got the impression that your therapist has not understood what you have said?

• What did you do with it?

• (Does the content of the journal note reflect the conversation you had with the therapist?)

• Have you experienced generalization/biases from clinicians involving your Sami identity ? If yes, is it expressed in the journal notes?

Snowballing – do you know anybody that could be relevant for this study?

Acknowledgments

The authors wish to thank SANKS for financing the study, and the user representatives and clinicians for providing invaluable insight and input in the preparation of the interview guide. The authors declare no conflict of interest.

Disclosure statement

No potential conflict of interest was reported by the author(s).