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How to Protect Patient Privacy and Information While Conducting Ethnographic Research

Hala Al-Jaber

We provide you with guidelines to protect patient privacy and health information while conducting user research in clinical settings, including precautions to take in order to comply with HIPAA regulations.

How to protect patient privacy while conducting ethnographic research

In a recent study, Macadamian UX researchers went onsite to observe physicians in the United States to understand how they use specific technologies to complete their day-to-day tasks. Focusing on the physician experience meant that it was important to observe their interactions with patients. And of course, when observing patients, we had to take into account their privacy and confidentiality, and ensure that it was being kept to the highest standard. In this article, we’ll go over how to protect patients’ privacy while conducting ethnographic research in a clinical environment.

How do you prepare to observe patient-physician encounters?

  1. Understand the context in which you’re observing.
  2. Understand who the patients are.
  3. Keep the facility manager, the physicians, and the patients informed of the purpose of the research.
  4. Prepare a HIPAA form for patients.
  5. Prepare a consent form for patients in order to take photographs and audio/ video recordings.

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1. Understand the Context in Which You’re Observing

When preparing for your ethnographic study, seek to understand the context in which you will be observing your participants. Are you observing in a hospital, clinic, or physician’s office? Is there a facility manager that you can work with? Different facilities may have different requirements for having researchers onsite. Talk to the facility managers and see what permissions/documents you need to prepare/sign and have them ready prior to going onsite.

2. Understand Who the Patients Are

While preparing for ethnographic research in the medical field, it’s imperative to understand the types patients you may see in a particular context. For example, are they typically seniors? Are they under 18? What state will they be in when you’re onsite? Are they there for a typical visit or a specialized visit? How long are visits? What does a visit entail? Knowing the answers to these questions will help you understand how to best prepare for the study. Understanding who the patients are will help you determine who needs to give you consent to observe (e.g. the patient, parents of youth, legal representatives, etc.).

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3. Keep the Facility Manager, the Physicians, and the Patients Informed of the Purpose of the Study

To ensure that the facility manager and the physicians are aware of the purpose of our study, we prepared a “what to expect” document. The document outlined the purpose and the goal of the study, the schedule of the day and the activities (e.g. pre-observation interviews, observations, mid-day checks-ins, etc.), and who will be there. Sharing this information ahead of time gave the physicians and the facility managers a chance to ask questions, inform the patients about the study, and set expectations. While preparing for ethnographic research in the medical field, consider creating a similar document so that all stakeholders are aware of your study purpose and goals.

4. Preparing a HIPAA form for patients

As patients checked in for their appointment or treatment during our study, the facility manager informed them that we were onsite and explained why we were there. They handed out HIPAA authorization forms to the patients to get their consent for us to view their protected health information. Although we didn’t need the patient’s health information for this study, we were on site and were able to see their information, so it was important to get their consent.

If a patient agreed to sign the form, we were able to observe that patient’s encounter with a physician. However, if the patient did not sign the form, we did not observe that specific encounter. You may need to prepare a similar form in advance of your onsite visit. Below is a general checklist of what to include in your HIPAA authorization form, but make sure you run it by your legal team.

What to include in a HIPAA form for patients:

Green checkmark   Statement that the institution undergoing observation has given you permission to undertake a certain research project.

Green checkmark   Statement of the specific tasks/activities of the research that include/affect the patient.

Green checkmark   Statement of who, from your company, is involved in the research and will be onsite. Make sure to list everyone who will be onsite, not just one select person.

Green checkmark   Statement authorizing the institution at hand to disclose the patient’s personal health information as defined under HIPAA to you for the purposes of the research.

Green checkmark   Statement ensuring the confidentiality of the patient’s personal health information, such as name and address, and how their confidentiality will be maintained (i.e. blurring out names and any identifying features).

Green checkmark   A set of terms for the patient to agree to, some of which might include:

  1. Authorization of use and disclosure of specific information.
  2. Permission for your company to perform the research at hand and view the patient’s information while onsite.
  3. Statement that the patient understands that they can withdraw authorization to view their personal information and describe how they can go about withdrawing consent.
  4. Statement that the patient understands that if they do withdraw consent, the health institution will no longer share their information, however, that doesn’t affect your company’s actions prior to receiving the withdrawal of consent.

Green checkmark   A place for signature of patient or of patient’s representative in the case of a minor or patient of unstable mental state.

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5. Prepare a Consent Form for Patients in Order to Take Photographs and Audio/Video Recordings

If a patient signed the HIPAA form, the facility manager would then provide the patient with a consent form. This consent form requested their permission for us to take photographs and audio/video recordings of his/her encounter. In the form, the patients would either agree/disagree to have recordings of their interactions with the physician. They were assured that their names, any personal information, and any identifying features would be blurred out of any photographs and videos. If a patient disagreed, we were still permitted to observe his/her encounter and take notes but not record the encounter with any other means. Again, you may need to prepare a similar form in advance of your onsite visit; you can use the guidelines listed below to help you develop a form for your research. Just make sure you run it past your legal team before distributing.

What to include in a patient consent form for photographs and recordings:

Green checkmark   Statement authorizing your company (including all those who are involved in research) to take photos and record video/audio of the patient for the defined project.

Green checkmark   Statement describing the scope of work involved, specifically how the patient is involved in the research, and state that by signing, the patient understands this.

Green checkmark   List all formats that the patient consents you capture their information in (i.e. video, photo, notes, quotes).

Green checkmark   Statement that the patient understands these recordings become property of your company and are not provided to the patient post project, however, patient confidentiality will be maintained by taking specific measures. List the measures that you will be taking to ensure confidentiality.

Green checkmark   Statement of how these recordings may be subject to editing and internal use of your company (e.g. internal research reports, internal project presentations).

Green checkmark   A place for signature of patient or patient’s representative in the case of a minor or patient of unstable mental state.

Having a clear understanding of the purpose and goal of the study helps the patients feel at ease, which makes for a better and smoother observation experience. If you’re doing research in the medical field, ensure that patients are aware and agree to having you onsite. If you need to record any visuals or audio, get the patients consent before recording and blur or remove any identifying features or information from all recordings. In addition, prepare forms that you need to hand out to patients or physicians and ensure that they are vetted by your legal team. It’s important to get formal agreements to avoid any legal issues.

If you need any help getting started on conducting on-site ethnographic research, we’d love to hear from you.

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Author Overview

As a User Experience Specialist at Macadamian, Hala is committed to and passionate about improving the overall user experience of any application or system that she works on, at any stage of its life cycle. Hala utilizes numerous qualitative and quantitative research methods to understand the needs of end users to ultimately create more valuable products. Hala holds a Bachelor's degree in Interactive Multimedia and Design from Carleton University and an Advanced Applied Arts Diploma from Algonquin College. When Hala is not doing UX-y things, you can find her at a hot yoga studio.