It’s true. I would imagine the majority of projects that an Interaction Designer works on are for people they may have never met, and have no idea what their users need or the processes they take to meet their needs. This could be true from anything as simple as re-constructing a bus system app if the Interaction Designer has never ridden a bus, or as complex as attempting to create, through design, a solution to the wicked problem of access to mental health care in rural America.
The latter of the two examples is what I am focusing on, and have been for the past 16 weeks or so.
This initial blog post is the beginning of a series of stories. Intended to serve as an overview of the backlog of all the travel, research, data synthesis, and real user scenarios (names changed) that I have gathered and now currently processing out design ideas. We will identify the key players, the where, when and how they go about meeting their needs. As well as the obstacles and challenges both the patient and the caregivers face in their journey through the difficult process of both access and care.
There is a lot to catch up on, so let’s start from the beginning.
I began my research focusing solely on access to general healthcare in rural America.
I was drawn to subject this initially because of my own upbringing in extreme rural Texas. Where the nearest hospital you could visit for anything more than vaccinations or stitches on your knee after falling out of a tree per say, was about an hour away. During my contextual inquiry, where I went to a rural Texas town, investigated their medical facilities, and interviewed both physicians, caregivers, and patients, interviewing and observing them in the environments where they lived and worked; I actually realized a larger problem than access to general healthcare was access to mental healthcare. And in rural Texas, as well as the rest of the rural United States, access to mental health care facilities I found to be tedious, illusive, and sometimes non-existent.
For most of us access to a therapist is relatively simple. The person reading this, myself included, may know a handful of psychiatrist or psychologist that can be accessed for an appointment during their lunch hour. In extreme rural areas however where the majority of the people are either on Medicare, Medicaid, or fall between the coverage gap of not being poor enough to qualify for Medicaid, and not being old enough to qualify for Medicare, are directed to privatized mental health centers. These centers are few and far between and operate on grants, donations, and the kindness of wealthy philanthropist to provide therapy and medication to those in need.
However, there is a catch. In order for the center to pay for the visit and the medication the patient has to actually be physically present in the facility AND rather than being able to speak directly in person to a therapist, the diagnosis is done via teleconference. This means that the patient must drive, sometimes up to 3 hours to visit the center (walk ins welcome) and talk to a TV screen.
This in and of itself is barrier number 1.
I had the opportunity to interview a caseworker that had just retired from one of these centers and from that interview a number of insights were gained as well as some very compelling stories. She was able to give me information about the patterns she witnessed in her 14 years of service.
That there is a stigma around seeking help for mental health issues, most likely shared throughout many societies but specifically in an area where “everyone knows everyone’s business”. There is a perception that you should be able to suck it up and it really takes loosing it all and hitting rock bottom for individuals to seek help. This generally happens when their personal support system has been tapped out. They feel alone and the final option is to drive, once again, to a clinic far away to speak to a psychologist via teleconference.
Another issue in very rural areas is access to technology. During the course of my research I personally had zero cell phone service, and admittedly drawing from assumptions, many of the homes in the sparsely populated areas looked as if they did not have running water let alone wifi.
And then there is the glaring isolation. Homes in the areas I visited are sometimes miles apart. There are “towns” I put in quotes, that really are just a few households spread out on a large piece of land. Some having populations of just 100ish people.
A number of publications I found had done intense research on this very topic, thus validating that this is not just a personal problem it is a problem that affects society as a whole. One paper entitle “Mental Health in Rural America” illustrates the shocking statistics that were uncovered in their research.
[excerpt]”In a review of studies investigating the prevalence of psychiatric disorders in rural primary care settings, Sears and colleagues (2003) found that 34 to 41 percent of patients had a mental health disorder. Additionally, results of studies of seriously mentally ill individuals indicate that rural residents have poorer outcomes (e.g., reliance on inpatient services, increased symptom severity) when compared to urban residents, especially if there are co-occurring substance abuse issues (Fisher, Owen & Cuffel, 1996; Rost et al., 1998).
One striking difference between rural and urban populations is the higher rate of suicide in rural communities, which has been a consistent trend for more than a decade (New Freedom Commission Subcommittee on Rural Issues; NFC-SRI, 2004; Institute of Medicine, 2002; Stack, 1982; Wagenfeld et al., 1994). Specifically, the suicide rate for older adult (elderly) males and Native American youth in rural populations is significantly higher than in urban populations (Eberhardt, Ingram & Makuc, 2001).
Adults suffering from depression, who live in rural areas, tend to make more suicide attempts than their urban counterparts (Rost et al., 1998).”
This is a real problem.
So after weeks of contextual inquiry, transcription, secondary research gathering and synthesizing out all this data I could, I then began developing some insights into what this all meant. There are some serious problem opportunities that could be addressed.
Questions I asked myself along the way:
- How can a center stay connected to their patients and monitor their mental state and medication regimen after they walk out that door?
- How can any tracking or monitoring of a patient be performed without seeming clinical or cold?
- How can a support system be established for patients that are isolated?
- How can technology be taken out of the picture and a program still work?
- How can I actually get a patient in this environment in a particular mindset to even care about following and participating in a program?
I went through a series of many many brain dumps of potential scenarios, at least a hundred design ideas. I concept mapped, and process flow diagramed a few I thought were potentially viable. Threw those out and started over again. I did storyboard after storyboard attempting to validate through real life scenarios of how some of these ideas would play out, and finally landed on one over arching theme.
What I am currently iterating on is a Patient Journey Kit that utilizes Fed-Ex or the postal service rather than a smart phone or a computer.
This kit will be packaged with their medication, and seeks to guide the patient through the process of self-recovery week by week.
I would like to include:
- Real stories from real people expressing their experience, a new story each day/week that hopefully identifies to the patient that they are not alone. And what they might be feeling is not shameful or wrong.
- An encouraging progress tracker, that provides information about how the patient may be feeling taking their medication, so there are no surprises and empowers the patient to be aware of their mental state.
- A tear out and mail back interactive questionnaire that does not feel like a questionnaire but more like a personal check-in. It will be mailed to their caseworker, pre-posted with the name of the caseworker and address pre-filled for the patient’s ease of use.
I currently have about 6 iterations of how this could possibly play out, and how the system logistics could actually work.
Next steps include more sketching, more scenarios, and narrowing down to at least three rough working prototypes to test with both therapist and patients this week.
I am very excited about this project moving forward. The following post will include status updates of testing results, iteration prototypes, and new insights I gather along the way.
I would like to hear from you! All information is valuable so if there is an opinion or comment that anyone would like to share to benefit or critique the project I encourage any and all feedback.