Oral histories while maintaining medical privacy information

Mary Closmann Kahle Discussion

Hi, everyone. I'm working on a historic preservation project related to one of the state hospitals that treat people suffering from mental illness. We are considering incorporating an oral history component. Do any of you have experience with interviewing staff or patients? What are the best procedures to respect privacy while also getting the story you want? We're also considering having an online portal for people to share their stories and ephemera, so I have the same concerns with it.


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Kia ora! My colleague at Auckland University of Technology did an oral history project (with video) interviewing families and people living with mental health challenges. She wrote her PhD on the project. (https://openrepository.aut.ac.nz/handle/10292/8934) She thought really hard about how to manage the process appropriately, and her work is worth a look. I was interviewed for the project and was very impressed. Through the university she was able to make the provision for free counseling as a follow-up for anyone who wanted it, which was a great way to care for her interviewees.

We have recently done oral history interviews with nurses at the beginning of the Covid-19 pandemic here in Aotearoa New Zealand. We made a podcast, and the nurses agreed for their voices to be used but not to be named. (https://www.rnz.co.nz/programmes/inside-the-bubble) The full interviews are held at Auckland Libraries, and in a rare agreement, the nurses are anonymous in that collection too. Here's an example: https://kura.aucklandlibraries.govt.nz/digital/collection/oralhistory/i…. Although it's not ideal to do so, we decided that it was better to ensure the safety and comfort over our own processes. We felt like the contribution of people with lived experience managing health practices in a fluctuating environment was vital to the story.

Happy to discuss! Ngā mihi nui ki a koe from Aotearoa New Zealand.

Thank you so much - this is great information! I love the approaches used in both projects and will take this information to my committee. I've been learning so much through investigating this process and will enjoy delving into the links you sent me. Again, much appreciated.

Mary Kahle
Austin, Texas

Greetings. I can speak to this concern as a person recently interviewed in an oral history workshop that resulted in a recording that could have been included in a publicly available archive in a health-unrelated, general collection. I am on disability benefits and have a very low social media profile. I was concerned that this one-hour fragment of reflections on my life that did touch on my history of illness could be accessed and become part of the record on which my continuing benefits eligibility was determined. In my case, what I disclosed would probably have bolstered my case, but I chose not to have the interview included because I felt it was not a full enough story IF it was accessed for the purposes described. (Cf, the Boston College Belfast case.) I am concerned that these interviews that are being conducted worldwide to try to capture the experience of patients and caregivers during the pandemic might have very real, unforeseen implications for the people most heavily impacted mentally and physically by this pandemic (be they currently caregivers or patients), given the resistance of governments and private insurers to opening the Pandora's box of compensation claims related to this pandemic's long-covid and psychological stress. I just write to flag these potential unforeseen aspects of what I believe are worthy projects for the individuals narrating.

Kate Skorpen-Claeson
Maine/southern Sweden

Hi, Kate. This is great information - thank you for responding. I'm finding that there's a lot more to doing interviews with vulnerable populations than I dreamed. I'm so grateful to the people who've responded and increased my knowledge base on this. And you added a new dimension, that of the issue of medical benefits hinging somehow on the interview. I'm also familiar with the Belfast case, which reveals a whole slew of issues in its own right.

Thank you again.