Health Records: Research and Immersion
After outlining our interest in delving into health records, our design team (Bhavini Patel, Jacob Rader, and Scott Gerlach) has been immersed in research the last two weeks. As designers, we approach research with the intent of building a rich mental model of a problem space by exposing ourselves to as many contexts and relevant viewpoints as possible. As such, successful research is largely dependent on our ability to tap into the latent knowledge and empathize with the experience of the people who are closest to the problem space. Layer on top of that the desire to make a social impact–one of the core tenets of the Austin Center for Design–and the need to identify and connect with at-risk research participants quickly emerges.
With a topic like health records we had a really hard time defining the problem space, let alone where to begin our research. We knew that we wanted to study health records; we didn’t know where to start. We leaned on a personal contact, a social worker for a major medical provider, to help us create a quick scaffold of the problem space as well as identify some of the populations who are most at risk in the healthcare system in relation to medical documentation. Her guidance helped us focus our research on individuals without health insurance particularly individuals who have chronic or concurrent health issues, individuals with cognitive or mental health issues, and individuals who have recently experienced an acute health event.
With a focus to guide our research we reached out to our networks and communities in search of participants who could teach us about their perspective of the healthcare system. In this we focused on three types of participants:
Patients – currently or recently receiving care within the healthcare system.
Professionals – employed in a healthcare related role.
Tangents – interacting with the health space in other ways.
In order to effectively engage participants in each of the three domains we employed a variety of activities and techniques in the last few weeks ranging from carefully curated inquiries to ad-hoc street interviews.
Perhaps our most successful research method so far has been through intercepts, where we go out into the community and engage participants on the street for short interviews and in-context inquiries. This method bridged access to members of the community that we wouldn’t normally be able to reach through our own networks, including the at-risk and homeless.
One area that we focused on was under the i35 freeway bridge, between 6th and 7th Streets. On the weekends this area is used as a resource center for the homeless, where social workers and volunteers provide food and services. To conduct our intercepts we set up under the bridge with a sign and asked participants to fill in the blank: “I want healthcare to be _________”.
This proved to be a great way to engage the community. We didn’t have to force ourselves on individuals, rather, we allowed those who were interested to engage us. This created more open communication and allowed us to get at harder, focused questions much more quickly. Ultimately this yielded a number of rich interviews and contextual explorations with at-risk participants that we wouldn’t have gotten through any other method.
Our favored method in research is contextual inquiry. This method involves going into an environment and engaging with our subjects as they participate in activities. Actions are truth; there is much less ambiguity when we observe behavior. This becomes tricky when we start talking about people’s health. How do we observe behavior around a medical event or medical records?
One way is to manufacture activity. We did this during in home interviews by prompting our participants to go through their medical records. We would conduct a brief interview with our participants and after we would attempt to reconstruct what we called a “Doctor Timeline”. With this activity we attempted to form a chronological list of doctors with our participants using only their medical records. This gave our participants a purpose to go through their records.
Another way we manufactured experiences is by turning our research lens back at ourselves. For this project all three of us have been trying to track down our medical records, allowing us to experience the struggles, time, and financial burdens that go along with that process.
A number of our participants have been in different cities or are unable to meet with us in context and so we have engaged them over the phone. While these interviews haven’t given us the same empathetic experience that an inquiry would, they have been invaluable in terms of informing our understanding of the medical environment, especially in how medical forms and artifacts are used on the professional side.
When we are scheduled to meet with a participant we try to have a goal or direction outlined beforehand. In some cases this means designing activities that allow us to engage our participants and encourage them to think deeply about a subject or externalize an emotional journey. Previously we talked about creating a Doctor Timeline with our participants from their medical records. We’ve also had participants draw an Emotional Timeline. A Doctor Timeline is a chronological ordering of medical relationships a patient might have, whereas an Emotional Timeline is a chronological order of emotions that a patient goes through. In the case pictured above we focused on control or, specifically, the loss of control. The participant was also asked to mark significant moments on the Timeline and externalize them in the form of a sketch. This method allowed the participant to constructively revisit an emotional time in their life while simultaneously articulating an experience framework that we were able to ask questions around. The result was one of the most emotionally rewarding and physically draining moments of our research.
Artifact Collection & Photography
Through our research we’ve collected a number of documents and artifacts associated with medical records and health journeys. These include patient and doctor forms, lab reports, records requests, ID cards, medical records and imagery.
We also feel that photography is an invaluable part of the research process and have been diligent about documenting our participants along with their interactions and environments.
Improvisation, thoughtful planning, persistent correspondence, trial and error, directness, and discreteness have all played important parts in our research. But above all we have found that putting decisions in front of our participants and giving them an opportunity to be heard has been the most important guiding principle in a sensitive area of research. We have been consistently humbled by our participant’s openness and honesty about a complex and sensitive topic.
If you have any comments or questions feel free to contact us at HealthRecords@ac4d.com