Health Records: Reflections and Opportunities
As graduate level students at the Austin Center for Design, we are leveraging interaction design methodologies with the purpose of creating social change through double bottom line business endeavors. Our design process is characterized by three distinct, interdependent phases: research, synthesis, and prototyping. Over the course of the one year program at ac4d, students aim this process toward wicked social problems.
For the last eight weeks, our design team (consisting of Bhavini Patel, Jacob Rader, and Scott Gerlach) has been researching and making sense of the complexity in the health record system. We conducted three weeks of qualitative research focused on how patients and medical professionals interact with each other and in which ways the documentation and artifacts created in that process affect the care given and received, respectively. We had a specific interest in studying this topic through the lens of patients who are at risk due to insufficient insurance and access to care as well as people who face challenges like chronic or concurrent health issues.
Through our research process we had the opportunity to inform our intuitions by putting ourselves in context with people and orchestrating opportunities for them to share their latent knowledge and informed understandings of themselves and how they relate to the healthcare system. As a result, we were able to develop rich mental models of the people we met and the challenges they face.
In synthesis we took this research, externalized it and started making sense of it.
Once put into malleable, moveable forms we created groupings of data that seemed related. Our research area was so large that we found it necessary to arrange these groupings into broad categories. Subsequently, we took these broad categorical groupings and went back into the details of the data to see if we could see a meaningful narrative forming across each broad category of the research. This is inherently a deeply biased and subjective process meant to provoke new ideas and identify meaningful opportunities for impact through interaction design.
What follows are articulations of our design team’s shared understandings which were synthesized through this rigorous process.
The healthcare system is multifaceted and very complex. As hospitals and clinics have consolidated and formed into larger heath entities, the systems and tools that they’ve created to manage that complexity have also grown. As these systems of organization have rapidly dilated, they’ve outgrown their supportive role and now occupy an authoritative one that is creating it’s own layers of complexity. Sadly, it’s primarily this bureaucratic structure that sets the tone for how, when, and why care is delivered to patients.
We were able to engage with these systems contextually: touring medical facilities, spending time in records departments, and interviewing nurses. When you spend time in this world it’s hard to not recall the opening sequences of the movie Brazil, where our harried technocrat tries to navigate a convoluted and confused world of files and procedures. We met some of those technocrats. Probably more than anyone else in a hospital, they see the hospital’s behavior on the whole because they have to interact with every part of it. They’re smart, talented problem solvers who are constrained by both a system that is overbuilt and a dearth of qualified people who want to do the work.
A majority of the time spent by a doctor is not visiting with patients, it’s filling out paperwork and documenting their procedures; in many cases they have to retell the same story in multiple formats in order to appease the requirements of the system: the records department, the billing department, and the legal department all of which draws their attention and energy away from patient interactions.
As daunting as this systematic problem is, we are compelled and convinced that it is ripe for design solutions. A co-created medical document, where the doctor and the patient create the record together would allow the doctor to spend more time with the patient and help build understanding and consent while still obliging the hospital’s bureaucratic requirements. There is also the possibility that if we put more power into the hands of the people that know this space, those heroic technocrats, they could build a more robust, agile system to better serve everyone’s needs. Finally we feel that the biggest potential comes from the patient side. If patients have a way to become more engaged and invested in the record system the balance of that system would shift from a focus on legal and billing toward patient understanding and stories.
One of the most stark disconnects we observed in the medical care system was between two parties we would expect to have the strongest relationship: the doctor and the patient. The disconnect is created on both sides.
Doctors expect a patient to have an understanding of their own health and to articulate it quickly. Of course this isn’t the case in practice and as a result doctors treat patients articulations anecdotally and have relied more on tests and metrics to determine a patient’s health. This in combination with faster appointment times and less contact with patients in the context of their day to day means that doctors don’t develop a deep, intuitive understanding of their patients.
Patients don’t have a good way to manage or tell their health story. The way the modern health system is built, we often see multiple new doctors and the prospect of starting over with a new doctor can be exhausting for a patient. Many people have a binary view of their own health: sick or healthy. Since they don’t feel heard or well understood in interactions with doctors, they are less likely to have a meaningful dialog about their own view of their health or develop a more nuanced and autonomous approach to their health care.
Additionally, patients don’t have authority over their own health story. Healthcare providers own and manage patient records. As a result the most tangible versions of our health history are spread out, fractured, and obscured from us making it almost impossible for patients to see or understand an authoritative narrative of their health.
At present medical records exist as part of the billing cycle, but we see the opportunity to craft a two part medical record, one part that exists similarly to the current system, with metrics and test results, and a second part that is a narrative around the patient’s health. These records could be built cooperatively between patients and doctors and would be a living document that would travel with a patient no matter where they went or who their doctor was.
Patients need to tell their stories, and doctors need to understand a patient’s history. This dual record system would lead to more patient ownership and engagement in their own health and a more productive contribution in the patient-doctor dynamic. In turn, doctors would gain more respect for and reliance on a patient’s perspective on their own health which would help restore the trust and intuitive understanding that are crucial to patient and doctor interactions.
Healthcare as a Bully
When we have health issues and emergencies, in many ways we become victims of our own health. When we enter into the healthcare system it’s usually when something is wrong. Once in that system, our choice and control is stripped away from us and reduced into a the form of a yes or no question; will you accept care? And, of course, that question is loaded with huge and often obscured implications. If we choose to reject care we’re denying ourselves, in some cases, life saving procedures. But by accepting care we’re agreeing to accept it at poorly communicated outcomes and ambiguous costs. And the price ends up being entirely disproportionate to what we normally expect things to cost. One of our participants, who had insurance, incurred $30,000 worth of debt from her accident, that’s on scale with other large ticket purchases we make in our lives, like a car or a house, but without the planning that’s associated with those items.
As we are making some of the most impactful decisions in our lives, we’re turned into consumers and denied the tools to apply critical analysis by the lack of information and emotional context. Furthermore, during our recovery, we are hounded by hospitals and collection agencies, bullying us for payment. It’s not surprising that the lasting impression for patients is that the very system that should be caring for us ends up victimizing us.
Everyone is constantly calling you and sending bills and all this stuff about how much you owe and why you owe it… I remember talking to someone about it and being in a hit-and-run and how it would be better if the person would have stayed. And I remember being so frustrated because, of course I know it would be better if the person who hit me would’ve stayed and given their insurance information, but the fact that they didn’t… it’s not helpful to me as a victim of a hit-and-run.
– Participant B
[Is there any any item or, or place that makes you feel anxious in your house?] I guess the mailbox, but it’s not in my house. But I guess the mailbox is where I have the most sense of dread. I hate getting the mail … ‘cause there’s bills in there and I hate them bills.
– Participant K
We think healthcare providers will benefit greatly by being exposed to and embracing a view of themselves as patient centered services. They must give weight to supporting the healthcare needs and all the surrounding service touchpoints with patients. This would leave patients with better perceptions about the care they receive and make them more likely to engage in outpatient care and adhere to treatment and payment plans.
Care vs. Perceived Care
Fundamentally healthcare is a service. There isn’t a tangible product that we get from the healthcare system. We go to the doctor to get care; they’re called healthcare providers. As we went around talking to individuals and hearing their stories it’s clear that, as patients, we have built a mental model and understanding of healthcare as a service.
The breakdown comes around the fact that healthcare providers don’t view what they view as a complete service. Their focus is on the life and death decisions and care that they provide, and rightfully so. But by ignoring all the other aspects of their service, health organizations are fundamentally driving people away from engaging in their system in a more proactive way.
Even if you save someone’s life, if you treat them poorly throughout the rest of the process and bully them, you drive people away from the very system that they need. When people have a negative experience with a service they are less likely to engage in that system again. The healthcare system is unique in that, for the most part, people can’t avoid it completely, they have to engage in care when their sick. This creates a mental model for patients that healthcare is only for when you’re sick, and in turn individuals ignore preventive care that in the long run would improve their overall health and reduce costs.
A significant disconnect is that healthcare providers don’t seem to see what they do as a service. This is reflected in even something as simple as the word patient; it implies that we need to be “patient”. The negligence of many of the service touchpoints leads patients to have worse outcomes because it encourages systemic procrastination which turns health problem into health emergencies. If healthcare providers looked at what they do as a complete service, not just one focused on saving lives, they would create better outcomes, both in an individual’s health and experience, and would encourage better engagement overall.
Interactions between doctors and patients are layered with complexity and mismatched expectations on both sides. Patients expect doctors to offer packaged explanations and solutions. Doctors expect patients to be able to absorb information rapidly and adhere to treatment plans outside of care. Increasingly, doctors have less time, less context, and less familiarity for each patient and naturally there is less comfort, honesty, and trust reflected from patients toward doctors. Meanwhile, the decisions that both doctors and patients are asked to navigate through these stressed interactions grow more and more difficult because of increased bureaucracy, cost, and latent social factors. Overlaying these themes together, it’s no surprise that Informed Consent–a clear appreciation and understanding of the facts, implications, and future consequences of an action–is often not really achieved in these interactions.
It seems unlikely that doctors will magically have more time for each patient or that healthcare options will suddenly become less complex or expensive. There seems to be a clear opportunity for interaction design, in particular, to significantly impact both patients and doctors through the creation of mutually beneficial, agile activities that help doctors foster better rapport of their patients and help patients build a more relevant understanding of their options.
One example of this, observed in our research, was a surgeon who hand-draws the basics of a surgical procedure in front of patients and uses the process to facilitate an open, questioning dialog.
The creative process serves as a series of queues for her to ensure that she is covering all of the pertinent information with a patient as well as naturally pacing the interaction to give space for her to address questions and assess comprehension. The activity also builds trust between her and the patient as a result of her ability to distill a complex procedure into a simple sketch that shows them important details like where incisions will be made, how surrounding anatomy will be affected, and what to expect in terms of outcomes.
An area we are interested in pursuing is in piloting a series of creative articulation activities with a healthcare provider as a means of facilitating more consistent and robust versions of informed consent and less erosion of doctor and patient trust.
Long-term, self destructive, habitual, behavior is pushing itself to the center of the healthcare crisis. Like many of the issues related to this problem space, there is an imminent rising tide without any clear plans of action. The most serious health issues that people are being treated for are largely the result of the lifestyle they lead. Diabetes, obesity, heart disease, liver damage, renal conditions and arguably even cancer and HIV result in part from negligent or destructive lifestyles and require persistent care plans that overwhelm the system on a logistical and financial basis.
Surprisingly, the medical professionals we interacted with don’t seem well equipped to help patients change their behaviors. The general approach to many chronic conditions like diabetes involves regular, knowledge-based educational meetings with a medical professional. And while these meetings are a good first step, they are inherently discrete. After consulting experts in behavior and habit modification like nutritionists and dieticians, we think a continuous approach with an emphasis on the patient’s development of tactics is more appropriate. One registered dietician we spoke to relayed a compelling story about her “non-compliant client”:
I would tell her what to do, but she never would do it. She still would keep coming back. She still paid me, you know? Every time … every time we talked, she paid me, um, and then suddenly, she shifted. And I was like, well what, what happened? She went on a trip and it was like a … a mission, like a helping the children trip, right? And she saw a picture of herself that wasn’t her. Like the … the photo was of like 2 kids or whatever, but like her belly somehow made it into the photo and she was like, whoa, you know? She kind of finally saw herself, but she had to like be in this other situation. And she was just like I’ve got to get it together. I’m helping these kids in Africa like for wealth in their orphanage and you know? I’m over here and not dealing with my own … my own stuff. Um and it clicked and then she used all of the stuff that we had talked about for the last 2 years and like immediately dropped like 80 pounds.
In many ways, behavior change can be hard to pin down because the moment that a patient changes their motivation is inherently serendipitous and the triggers for their behavior may not be easily identified. This can feed into a false perception that behavior change is out of the hands of healthcare professionals. But we believe just the opposite is true, no one is in a better position to give patients a reflection of their own behavior and create opportunities for motivation changes and awareness of triggers.
It’s obvious that if new tools and technologies are not developed and aimed at the issue of behaviors that are destructive to health, the system will not be able to address the volume and persistence of chronic health problems in the future. The first steps are to help medical professionals make more meaningful probes into client behavior in their initial assessment process and leverage that to create greater trust and dialog in treatment plans. Since interaction designers are already utilizing ethnographic techniques and cultural probes to reveal human behaviors and motivations, there are many opportunities for meaningful adaptations of existing practices.
Healthcare Encourages Misuse
Among the themes we observed in the healthcare system, one of the hardest to unwrap was the self abusive cycles that are gridlocking many healthcare facilities. Consider an uninsured person who suffers from chronic renal conditions. In Austin, they don’t have access to dialysis outside of emergency care. The consequence: they wait until they are so ill that they qualify for hospitalization, they are admitted through the emergency department (which cannot deny them care), they receive life saving dialysis, and then they leave the hospital and repeat the same process over the next three-four weeks. The hospital absorbs the loss (and ultimately has to compensate for it by charging more for care or cutting costs elsewhere) even though the patient could receive regular, less costly care that results in better patient outcomes.
On a broader scale, this sort of misuse of emergency care–as reactionary stop gap for challenges like chronic illnesses, mental health issues, and addiction management for populations without adequate healthcare access–reinforces poor mental models among at-risk populations. Patients who finally get access to care via emergency room hospitalization are likely to return straight back to the emergency room in the future to attempt to gain access to any level of care. One major healthcare network, here in Austin, calls these patients “frequent flyers” and has devoted staff and developed procedures for coping with the demands these patients put on the hospital. In short, the hospital is forced to adapt and try to address gaps in other areas of the healthcare system because they are the last line of defense. Paradoxically, the more the hospital adapts the more it attracts a disproportionate number of uninsured patients and the more difficult it becomes for the hospital to maintain a healthy revenue cycle.
Healthcare networks, particularly those in urban areas, have the opportunity to address the needs of the at-risk populations as well as reduce their own costs by taking a holistic approach with an emphasis on facilitating proactive efforts and maintenance care. Put another way, they should emphasize outpatient care that reaches out into communities rather than inpatient care that is forced to catch everything that comes its way.
We see an opportunity to create pilot programs with local hospitals (in conjunction with city services like the Medical Assistance Program here in Austin) that develop mobile, durable medical records that are tied to proactive care, city transportation, and appointment services.
Our research process gave us the opportunity to engage people who are facing many concurrent challenges in conjunction with managing their healthcare. We talked to a homeless man who self identifies as alcoholic and bipolar. He describes taking his bi-polar medication regularly as an attempt to do something healthy for himself and create some stability.
Well, yeah. Dealing with issues on the street, and I try to carry my medicine with me, like 24-7 a day, in my bag there. It goes there with me, but it’s not guaranteed that I’m going to take my medicine every day because it’s just … I have… not substance abuse, but I drink a lot. Sometime that will keep me … Well, anyways, there a lot of stuff that goes on with everything; literally, you live on the street being homeless and all, dealing with issues. Then the alcohol doesn’t help either when you … I like to say, that’s my best friend. I don’t know what I would do without it; but now, the doctor’s telling me that I might have to … well, I need to stop. Basically, just dealing with bipolar and everything.
I am 53 years old, and it’s coming to a point where I just need to focus on my health. It’s kind of hard, but I think in my house it’s sitting at about 100, 170 on the housing list; so, maybe I can focus on me taking my medicine and be healthy. I think God is with me. That God is with me. I just want to be better. I want to feel better. If I move I can take my bipolar medicines and stuff, that I would feel better. Yeah, maybe I might not want to have that next drink; so, I think that have a lot to do with it, me not being all night. It puts me out there on edge.
We talked to many people like Participant L who were having a hard time finding any points of stability in their lives to build on. Somewhat surprisingly, we found a counter-trend among many homeless veterans who have access to VA care.
Okay, here’s my situation. I was in prison for 26 years. I was just released last year. When I got out, I wasn’t able to get a job right away. In fact, I’m still unemployed, but I’m a student. Without the VA, man, I’d be in a bad, bad, bad position. I’m really thankful to them that they help me.
Yeah, because I’m being treated for hypertension. The main medical issue that I have right now is hypertension.
With the VA, they schedule for me. They schedule for an appointment. They try to do it every 90 days. If you have an appointment that should come up before that, then you can always go, and they’ll schedule you an appointment.
In talking to homeless veterans, this theme was repeated over and over: their perception was that they had a much more stable and manageable relationship with healthcare than those around them without access to the VA care. They also expressed that they knew the VA had their medical history and relevant paperwork. The doubt and uncertainty about where and how they would receive care was minimal and they knew they could rely on the VA to contact them and set up appointments on a regular basis.
It’s unclear how the VA compares with other healthcare facilities in Austin on the basis of actual treatment of medical issues. What is clear is that as a service the VA performs much better and as a result, it’s clients are much more likely to engage in proactive care. And actually, it’s a mistake to decouple the two forms of evaluation because they are linked together by the affect they have on patient stability and behavior.
Our conclusion is that healthcare providers need to be much more holistic in their approach: especially as it relates to the logistics of getting patients in a routine of regular appointments and helping them prioritize their medical care. There are many design opportunities in this area: like responsive appointment systems that operate through text messages or repurposed atm machines (or kiosks, etc.) to help patients engage in care more regularly. We think this would be especially successful if it also helped address transportation logistics and tied itself to existing care services for at-risk populations.
Our design team is currently developing ideas for businesses and then narrowing to one that we feel has to most opportunity for a sustainable model that creates the largest social impact. Now that it’s exposed publicly, we are excited about questions and comments related to our work on this topic. If you’d like to share you thoughts, experiences, and insights or just give us feedback we’d love to hear from you at HealthRecords@ac4d.com
-Bhavini, Jacob, and Scott