Collaborating with Nancy Duan and Helen Li, we decided to explore the challenge of helping low health-literate adults better communicate with their health care providers. Using participatory design and research techniques, we created a low-tech workshop toolkit to help the students of the GPLC foster confidence in themselves and camaraderie with one another as they navigate the complex world of the health care industry.
  

CLIENT: GREATER PITTSBURGH LITERACY COUNCIL
ROLE: RESEARCHER, DOCUMENTARIAN, DESIGNER
DELIVERABLES: LOW-TECH WORKSHOP TOOLKIT

THE CHALLENGE

HOW DO WE HELP PEOPLE COMMUNICATE WITH HEALTHCARE PROVIDERS?

Trying to understand what health literacy meant as a broad concept, our team looked into existing data on some of the barriers to medical care. Through our initial research, we discovered a lot of existing materials that had been developed for a patient pre-visit preparation. The majority of what we found was difficult to understand and even harder to use.

Existing tools for pre-checkup preparation, and other tips for dealing with the health industry are cluttered, unpersonalized, and put a lot of pressure on the patients

THE PROCESS

TALKING WITH THE LOCAL COMMUNITY

Our first trip off-campus was to visit the Family Support Center and community center in East Hills. We spoke to the community leaders at the center as well as the social worker who ran the family support center. We learned a bit about what the families came to each center for and what types of activities they came to do.

The social worker at the family support center talked at length about the difficulty in getting neighborhood members to come to the support center for help. They were looking for another social work team member and she lamented the constant turnover in staff. This, she said, was a key issue she dealt with constantly. The families visiting the center expressed discomfort working with a new social worker every time they came and did not trust the new staff.

Our second meeting was a week later with Rebecca Carpenter at the Greater Pittsburgh Literacy Council. She was our champion on the project and we discussed the various directions of focus. At GPLC there are two main groups: ESL and ABE. ESL students struggled less with health information, but needed assistance in communicating in English. ABE (or Adult Basic English) students ranged from low-literacy to pre-GED classes and varied greatly in terms of health knowledge. After looking at the populations and the initial research, we decided to focus on the ABE students at GPLC.

MORE BIG QUESTIONS

From talking with our participants, we knew that there was a lot going on. We used an affinity diagram to help us make sense of our initial research, and hone in on what our angle was with this research. The main questions we landed upon were:

Do you understand health services?
How do you access health services?
What are the barriers to health services?
What do you understand about health?

We then decided to create a research probe where our participants were able to express their understanding of health and the health care system via storytelling and roleplaying, while we were able to immerse ourselves in our participants stories.

PARTICIPATORY WORKSHOP

We developed a board game that included some general locations where you can receive health care or information in and around Pittsburgh. We identified some basic health issues and symptoms and designed “people” to represent these symptoms.

The idea behind using a game and fictitious personas was so that we can ask people rather sensitive health information without making it personal. The conversation would automatically involve what they knew about health and how they felt about certain health care institutions.

Fictional personas based on common health issues

Locations based on where you can go for health services in Pittsburgh.

RESEARCH PROBE RESULTS

KEY INSIGHTS

Participants were likely to turn to the ER for symptoms and overweighed the probability that symptoms meant a catastrophic outcome.

Many participants’ knowledge of the symptoms came from their own understandings of chronic illnesses like diabetes and heart disease

MEANING...

On the surface, the findings tell us that although our group does not necessarily have health literacy issues, but that the problems were stemming from somewhere else. On a deeper look, we found that much of what they said came down to a lack of trust in the health care system.

DESIGN AND REDESIGN

We looked into many possibilities, prototyping on many ideas while always keeping in mind the underlying need to address trust. Some of these ideas included decision wheels for symptoms and deciding where to go to for help, a rolodex of trusted healthcare providers, fridge magnets to articulate character traits of trustworthy people and the patients' health concern for the day, amongst many other things.

"FINDING A DOCTOR IS LIKE DATING..."

"...If you don't like the person, you wouldn't see them again." Given our findings, we focused our attention on building trust and trustworthy health information. We wanted to create a solution that made people think about their relationship with their doctor and assess what they wanted from the relationship. To do this, we went around with a simple two-question survey while telling people we were making a dating app based on trust. The idea was to have people talk about what they trust inherently in a person and what trust meant to people. Of the 20 people we surveyed, most people were quick to note the things they didn’t like.

Some quotes:
“People who don’t backstab me”
“Doesn’t interrupt me when I talk”
“People who don’t judge me”

Two realizations came out of this exercise:

1. There are a few key things that cause trust to breakdown and almost all of them are revolved around communication.

2. It is very difficult for people to talk about what they want out of a relationship as opposed to what they don’t want.

BUILDING & TESTING OUR TOOLKIT

From all of the things we found about forming trust, fostering self-confidence, and seeking trustworthy knowledge, we found that the key to fostering trust is understanding where the other person is coming from, as well as fostering self-confidence by creating the community through the workshop, and practicing the articulation . Our initial workshop consisted of four main parts: 1) Discussion on favorable and unfavorable traits of healthcare providers, 2) Writing down their questions and concerns on cards that represented different facets of their life and well-being, 3) Learning about a typical protocols of a general medical checkup, and 4) Practicing going through a medical checkup by role-playing Doctor and Patient with fellow participants. We ran the workshop with an Adult Basic English class in the GPLC, which was well-received and provided key feedback for the next iteration of our toolkit.

Some of our main insights from that session:

• They found the doctor/patient information the most useful
• The participants did not have any trouble thinking of questions to ask, but did have a need for note-taking
• They wanted to take the pieces with them after the workshop.

THE FINAL PROTOTYPE

CONSOLIDATING THE WORKSHOP BOOKLET

Thinking about certain pain points, we honed in on the insight the information that is provided must come from a place of trust and developed a peer group type model for our toolkit, with tangible takeaways from the experience. The ultimate goal with our workshop toolkit for our users is the creation of a space of open discussion about health, and promoting effective communication with each participant’s health care provider by first generating empathy between them

PART 1: TRUSTING THE INFORMATION FROM YOUR DOCTOR

Part 1 is focused on understanding what makes a relationship trustworthy. Using the qualititative data we gathered, we understand that people have very specific ideas for what makes someone trustworthy. Participants in the workshop would be asked to talk about what they don’t like about certain behaviors. Then we turn these negative associations of trust into a positive outcome. The participants are asked how they can apply these outcomes to their health care provider.

PART 2: BETTER COMMUNICATION

Part 2 is a different take on the traditional pre-visit checklist. Patients are traditionally asked to bring their three questions to the doctor and these cards are meant to help them think as broadly or specifically about their health as possible. They are prompted by asking what about their health they’ve been worried about and then asked what if any specific questions they have about each topic.

In addition to articulating their own questions, they learn the best time to ask those same questions in an actual checkup with the infographic on a typical checkup protocol that is taught to healthcare practitioners.
 

PART 3: MORE WILLING TO ASK QUESTIONS

Part 3 is a role playing scenario where we ask participants to pick a buddy and practice asking these questions with them. We’ve provided a participants with topics to discuss. The ideas behind the role playing is to practice the questions, garnering empathy for doctors as they play the role of one, as well as building a relationship with another person whom can be the patient's advocate later on.