By ANDY ORAM

HxRefactored, the conference put on jointly by Health 2.0 & Mad*Pow about technology & design in health care, draws a relatively small crowd–participants numbered in the hundreds, not the tens of thousands found at some health conferences. So I asked a leading health IT expert, Shahid Shah, why he invests so much effort in coming and make presentations to HxRefactored each year. He answered, “This is the only health IT event that covers not just the digital aspects, but the entire healthcare experience, focused on developers and designers who are building solutions. It goes beyond platitudes, cheerleading, and hand waving and gets into actionable advice that engineers need to know to build complex systems that will actually get used.”

And that really shows the key influence provided by design, broadly defined. You can get as “meta” as you want and stay within the field of design:

• Worried whether your staff will adapt to and use a new IT system? Success with that is a design goal.
• Determined not to let an IT system “get in the way,” but to ensure it enhances relationship-building with patients? Definitely a matter of design.
• Eager to make innovation a standard kind of thinking throughout your institution? Designers with the proper combination of support and independence can get you there.

Reflecting the sweep of design itself, sessions at HxRefactored varied from chronicling the path to successful designs, to describing the contributions technologies make, to recommending strategies for getting designs adopted.

Design as a way of Life

A hoary shibboleth of design is that practitioners must seek out users and collaborate tightly with them. A more pointed statement of that principle is to turn all users into designers. This means not flying in to do a design, collecting your pay, and taking off again. Instead, designers hang out in the hallways to meet people, cajole users into joining creativity workshops, and–with teeth gritted–attend committee meetings.

Comprehensive engagement came up from the start of the conference, as when Adam Connor in his keynote pointed out that isolated researcher can’t transfer their insights automatically to others in the organization–everyone in the organization must participate in user research. He also pointed out that no system makes sense except when one views the larger environment of which it is a part.

The CTO of HHS, Susannah Fox, in her inspiring keynote, said “Technology is a Trojan Horse for change…We say interoperability and open data, but we mean culture change.” Design, for her, must recognize people without power, which currently includes most patients and their caregivers.

Fox championed Maker-style innovation at the grassroots, such as promoted in the famous work of Eric von Hippel at MIT. Hundreds of people are making custom prosthetics, for instance. She also mentioned that a very useful sleeve to keep an IV firmly in a child’s skin was designed by a parent. Similarly, patients could improve their medical devices, but manufacturers deny patients access to their own device-generated information, and prohibit patients from making changes. Patients who lack access to research labs and academic libraries are finding the information online to improve their experiences. Fox didn’t describe the risks and downsides of these practices, but I found that acceptable because the risks and downsides are cited all too often to throw up barriers to competition and innovation.

Four expert designers who work in health care institutions spoke in a breakout panel about their successes, frustrations, and ah-ha moments. Design can work at multiple levels at once: the artifacts of daily behavior, the values that underlie them, and the assumptions that underlie the values. Administrators usually need some financial enticement–return on investment–to start a project, but can be caught up emotionally once they see it making a positive difference in patient lives.

Johns Hopkins Sibley Hospital holds one-day sprints to solve problems identified by staff, such as the prevalence of needle sticks. These short experiments don’t usually produce long-term solutions that can be used widely, but stimulate creativity and empower the staff to feel that they can solve problems. When the staff design their own solutions, the design team has accomplished its goal. Panelist Nick Dawson said that his team was started as the small Sibley Hospital instead of the parent institution because managers surmised that the smaller institution would be more agile and open to innovation.

Although aesthetic improvements characterize good designs, most go far beyond aesthetics to change the whole equation. For instance, children with asthma have trouble recording by hand when they need to take their medication. Instead, designers created an inhaler that emitted a sound whose pitch indicates how much medication they’re inhaling; another device can then record that measure and send it to the clinicians.

Matthew Van Der Tuyn said that good design may be able to turn around the most intractable patients–for instance, the “superusers” that every ER knows and dreads. His group at the Penn Medicine Center reduced these visits by 40% by figuring out the barriers that kept superusers from going to primary care physicians, and designing an intervention that helped them overcome the barriers. Van Der Tuyn’s description of the design process goes from Does it work? to It does work and finally How we work, when the solution finally becomes embedded in the organizational culture.

On a more prosaic note, Shahid Shah delivered a bracing keynote on how to achieve success with a solution or service in health care. He harangued the audience to give up grandiose notions of disrupting the health care industry, and just to find a niche for themselves: getting one billion dollars out of a multi-trillion dollar industry is not so bad. He called medicine “eminence driven” rather than evidence-driven, saying decisions are made by influential executives, and reminded us that the status quo is our biggest competitor. Finally, he made the point that one should make sure to appeal simultaneously to the user of your service, the party benefitting from its use, and the one paying for it–often three different parties in health care because of its heavily intermediated and inefficient mechanism of monetization.

Respect the science

The social sciences are always pressed to prove themselves, and have developed research strategies that provide evidence for their claims, imperfect as it may be. Designers must be willing to follow this pattern, which is pretty much common sense if you think about it:

1. Decide what you’re trying to accomplish up front.Without a goal, you’ll just wander in the desert until you run out of water (or less metaphorically, out of funding). And make sure this goal is achievable. If better outcomes require something to change in the larger environment over which your institution has no control, or outreach to a population that is unlikely to participate, don’t design your system because it will be moot.
2. Choose measures that you can collect and use.Figure out what people need to do differently to make your intervention succeed, and how much change represents success. (For instance, a certain number of pounds lost in weight, or a certain reduction blood pressure.) But you’ll never put your design into widespread practice if you’re looking at patient outcomes five years in the future. Pick some proxy for good outcomes, also called a mid-term variable, that you can measure in a matter of weeks.
3. Evaluate your design.And do so quickly, so you can adjust it and try again if it’s not achieving your goals.

In her break-out session on the role of evidence, Olga Elizarova started by pointing out the high stakes involved in health care: design can be a life-or-death matter. This theme came up repeatedly at the conference. She also said that the goal of a design is not to change behavior–that’s up to each individual–but to change attitudes. Understand why people engage in the unhealthy behavior to start with, and decide whether you can present a more powerful motivation to adopt healthier behavior.

Elizarova went on to list sources of evidence: literature reviews, health records, data from the field, and public data sets such as social media that aren’t directly health-related. She said that interactive tools can manipulate data and produce visualizations that take much of the skill out of evaluating evidence. Here I disagree. What I’ve found is that running a tool is easy–for instance, statistical languages such as R and MATLAB provide single functions to run any common statistical test–and the hard part is knowing which tool is proper to use for the data set and question you have. And as Elizarova mentioned, characteristics of the data such as the number of subjects participating have an impact on the validity of the evaluation.

Mental health, relationships, and addiction

In one of the opening keynotes, Nate Larson called mental and behavioral health inseparable from other aspects of health. He also warned designers not to remain beholden to current clinical workflows–the patient’s needs override them.

Jamie Thomson then came on to underscore the importance of relationships. Automated messaging (such as “remember to take your medication”), she pointed out, loses its force over time, but people are much more drawn in by messages that have personality and understand the individual’s diverse motivations for behavior change.

One strength of the conference was giving the floor repeatedly to people who described behavior from many angles. I was amused to see some people who claimed to be experts in telling stories and communication, but who read their presentations from scripts. But many presentations were not only emotionally powerful but potentially career-changing.

Neurologist and ethicist Adrienne Boissy reminded us that the health care system hurts many physicians as well as patients. Approximately 400 doctors commit suicide each year. This could be considered a design problem–not a consequence of any particular IT system or workflow, but of the ways health care systems force doctors to interact with patients. She called it a “system of broken hearts” and suggested that “emotionally empty” doctors could not function effectively with any IT system. She asked why there are no hackathons for empathy. Ryan Armbruster of Harken Health said that 66% of doctors report burnout.

Technology, unintuitive as it may seem, may draw more honest responses from people than human interactions. A lot of people who engage in “impression management”–trying to look good in front of doctors and nurses–may tell an avatar that something in their life is bothering them or that they’re engaged in risky behavior.

One team achieved a 30% increase in people showing up for scheduled colonoscopies by designing sensitive videos to convey information and overcome fears. The evaluation showed not only lower anxiety among patients who saw the video, but shorter procedures–which reduces the risk of errors–and a need for less sedation.

Technology can also extend the reach of group therapy. Sherry Pagoto at the University of Massachusetts Medical School pointed out that obesity counseling has traditionally been done in groups, but now can go online in what she called “peer-to-peer health care.” She carried out a study of weight loss counseling using in-patient visits, online groups connecting anonymously over Twitter, and a combination. Interestingly, all three groups did equally well.

Addiction was appropriately highlighted by the conference, particularly in light of the opioid abuse crisis. After a powerful performance by Drug Story Theater (a group of teens who have been through addiction and recovery), Governor Charlie Baker delivered a sensitive and personal keynote recounting how addiction and overdoses emerged during his election campaign as a top concern of people around the state. He excoriated the pharma industry and doctors for prescribing opioids so casually, and warned us that addicts were still stigmatized. Many people who attend support groups for family members of addicts feel they have to travel far from home so they don’t risk meeting a neighbor at the support group. “Talk about it,” he said.

Data is also useful in attacking addiction. Barbara Hebert suggested that the next overdose might be prevented or caught in time by taking data from such disparate places as the all-payers database, police labs, and a bevy of state-level data stores with complicated abbreviations. She is also looking for sophisticated explanations of how people get addicted, questioning common assumptions such the over-prescription of painkillers and the role of marijuana as a gateway drug.

Numerous psychological and social contributors to addiction were discussed. Margie Skeer of Tufts Medical school said that prevention doesn’t just persuade individuals to abstain from drugs, but helps them “meet the challenges of life events and transitions.”

Aleta Hayes, dancer and teacher, had us out on the floor of the conference room for her keynote. We danced, hopped, skipped, walked around while staring in each other’s faces, and played statues, ending each exercise with a hug. Finally she had each of us hug seven other people. Breaking down our social barriers, she reminded us that relationships trump everything in health care. The lesson stayed with me long after I got over the cold I came down with.

Kudos and news

The creation of a Center for Health Experience Design was announced at the conference. Adam Connor of Mad*Pow told me that it connects people at different institutions so they can brainstorm together and teach each other best practices. Even in its short initial phase, it has led to collaborations among people who otherwise would never talk to each other. The center is carrying out a survey currently about experiences integrating aps into electronic health records.

ClinicalBox won an award in a challenge cosponsored by ONC and Health 2.0’s new administrative arm, Catalyst. Zobreus and Harken Health won Design for Health awards.

PokitDok, a company I covered a year ago, is expanding their service not only to provide cost information to consumers but to help them get financing for their operation. The company is also starting to work with pharmacies around medications, currently to determine eligibility for insurance coverage.

Diaspark Healthcare is extending its telemedicine offerings to under-served areas in Africa, where doctors are simply unavailable in many geographical areas.

This was a great conference, even better in my opinion than the HxRefactored I attended last year. Most of the speakers I remember from last year were designers with a general background, covering health care along with numerous other domains. This year we heard from designers embedded in health care institutions for the long haul, along with clinicians, administrators, and others with on-the-ground experience. I hope this conference can change health care; it certainly focuses attention on the skills that will do so.

Andy Oram is a writer for O’Reilly Media