Health care providers love to vaunt the unique and subtle needs of patients. How many ads have you heard from cancer centers or health clinics touting their flexibility and showing grateful, tear-flecked patients?
But key aspects of our health care systems turn out to be rigid and heartless in practice. Despite the compassion of individual staff, our organizations tell patients in dozens of ways that they are widgets on an assembly line:
- We force patients to come early for every appointment and fill out the same paperwork each time with information they have given before.
- Patients traverse long, crowded corridors from one station to another, asking at each station for information they don’t get and never knowing how long each stop will take or how many more stations remain on their Kafkaesque journey.
- Patients rush to undergo batteries of mysterious tests, sometimes repeatedly, only to wait long periods to hear the results.
- We refer them to specialists who, it turns out, can’t see them, or who issue contradictory opinions without coordination.
- After frustrating and unsuccessful attempts to learn the costs of procedures in advance, they receive cascades of arcane bills and watch their funds bleed out to charges that bear little relation to their experience in the clinic or hospital.
More fundamentally, our field has stuck to a cycle of diagnosis and treatment that leads to people suffering through death in a welter of tubes and IVs, while 28% of all Medicare costs are incurred in the last six months of life. Pharmacologist Jay Gupta claims that nearly 50% of all seniors in the US take a medication that is not clinically necessary. This is expensive, debases their health, and leads to greater risks of adverse reactions.
These are the sorts of conditions that the unique conference on health IT and design, HxRefactored, confronts each year. The focus is on getting organizations to change their operations, with health IT in a supporting role. Over time, the conference has de-emphasized technology–although sessions on such topics as blockchains, wearables, and interoperability are still popular–and has boosted its approach to health care systems and larger communities. HxRefactored is held jointly by Health 2.0, now operating under the umbrella of HIMSS, and the design firm Mad*Pow.
The overarching question: whither technology?
Attending the sessions of this conference, I pondered the effects on patient/doctor relationships of automation and artificial intelligence, expected to be a 6.6 billion dollar market in health care by 2021 (page 2 of PDF). Will they devolve control to patients and help them practice self-care, or will they reinforce the tendency by health care institutions to manipulate patients as widgets? There is a real risk that the large, well-funded institutions investing in automation will fit it into their familiar philosophies of control. The technologies may simply reduce the costs of doing things the current way, without involving the patient further or pushing health care past current horizons.
Feeding my concern over the purpose of technology was the presence of several companies who have found a viable business model by occupying niches in a bad system: for instance, optimizing one aspect of finding a doctor in the maze of providers, or optimizing one aspect of a broken and wasteful billing system. I appreciate the critical importance of finding a place for yourself in the system, but the cleverness of these entrepreneurs worries me in two ways: first, that they profit from health care anarchy instead of fixing it, and second, that their business models may evaporate if saner health care systems come into play.
I hope that Mad*Pow’s recently launched Center for Health Experience Design follows through on conference goals and consistently champions the rights, responsibilities, and needs of patients, doctors, and communities. The opening keynote by Mad*Pow founder Amy Cueva touched on all the right themes, with such statements as “collaboration is the new innovation” and “worldwide, people are struggling to be heard in health care systems.” I will raise questions of control by patients, doctors, and communities throughout this article.
Conference themes
The expanding scope for design was laid out by Cueva. Classic design used to restrict itself to a single object (such as a Wiener Werkstätte teapot or the classic Eames chair), but the newer human-centered design invites in the users of a system to inform the design.
(Of course, many designers historically have raised their eyes beyond the object–just visit a home architected by control freak Frank Lloyd Wright–but for a long time they were outliers. As an unfortunate representative of the norm, consider the notorious Tilted Arc by Richard Serra, a striking artistic statement designed in 1981 with a total disregard for its effects on people and the environment in which it was set.)
Going further, purpose-centered design considers the object’s environment and how people interact with it, potentially rerouting an organization to meet its goals. If classic design focused on making a single web page beautiful and easy to read, human-centered and purpose-centered design would define the service offered by the site and how visitors can navigate through its pages to achieve their goals. Health care design can employ psychologists, teachers, technologists, and others.
Empowering patients
Although hospitals (and the Centers for Medicare & Medicaid Services) conduct patient surveys, I can’t find data on whether they use these surveys to good benefit. If hospitals do listen, can surveys improve anything more significant than the selection of TV channels?
A more intense, and perhaps more productive, effort is the Human Theater Project started by two medical residents, Omar Ishaq and Saad Mir, who described it in an HxRefactored keynote. These doctors lead patients to describe their stresses and experiences, capturing results on video. They claim that patients who participated have better outcomes and survival rates, while the professionals who viewed the videos showed increased empathy.
Payaal Patel, in the panel on the “Patient experience of the future,” said that researchers need to talk to patients to find out what really concerns them. For instance, a person who has trouble using her hands will be worried about how she can brush her teeth–a question that probably wouldn’t come up in a normal clinical setting. Too often, Patel said, we collect data only on deficits and disabilities, leading patients to feel depressed about their conditions and to overlook the strengths they possess that can improve their lives.
Researchers in health care, including pharmaceutical companies, are learning the benefits of listening to patients. If they design trials around topics that patients care about, more will sign up for the trials and persist to the end.
Ultimately, to fix the health care system, it must engage patients on a daily basis in caring for themselves better than they are doing now, and technology will play a key role. Particularly intriguing, to me, are opportunities for new data sources to break the stranglehold that health care institutions have maintained on patient data. These new data sources may well democratize the health care system simply because they run ahead of EHR vendors’ abilities to trap the data, and of hospitals abilities to monetize it. If a Fitbit can produce key insights into your health, maybe you can build a personal health care system around them. HIE of One is an example of an open source personal health record that allows the patient to share data flexibly with many caretakers.
New data sources came up during the session “Breaking down the silos,” ostensibly a technical session about interoperable software, but with intriguing forays into how to help health care systems evolve. Sumit Nagpal, co-founder and CEO of LumiraDx, started his argument with the observation that we need to reduce health care costs by moving treatment into lower-cost settings, notably the home. We need large care teams including the patient, the family, and various professionals, all sharing a care plan. And we need to focus on prevention and wellness. Nagpal was not afraid to say, “individuals have to be accountable.” But a holistic treatment plan based on prevention requires a lot of data that current EHRs don’t hold.
Holistic treatment also brings diagnosis and treatment closer to the patient. Modern equipment allows much testing to be done in the home, a drug store, or even an ambulance, rather than the lab or doctor’s office. Environmental sensors and social media monitoring can contribute to a 360-degree view of the patient. Predictive analytics can remind the patient to take her medications, keep her appointments, and so forth.
Another element of Nagpal’s proposal is a broadened consent policy, so that patients can share data with numerous caregivers without extra paperwork. He did not explore how this system might interact with segmented records, which would let patients restrict the kinds of information their providers can see.
Keynoter Robin Farmanfarmaian said that 70% of routine doctor visits could be done remotely. (The hedge-word “routine” here is ambiguous and probably significant.) She mentioned, as an example of bringing health care into the home, that patients with neurological problems could take tests as often as once a week, and that the tests could be gamified to make them appealing.
Research on telehealth is encouraging, but sometimes ambiguous. Although patients seem to like virtual visits, other data suggests that they might not reduce health care costs because virtual visits sometimes encourage patients to overuse their doctors.
Even insurers–favored targets for public invective–are evolving toward holistic, prevention-based care. These efforts were laid out in the session “Navigating the health system.” As Robin Gasco, from Blue Cross/Blue Shield of Massachusetts said, “We won’t fix health care with an app or a portal–we must straighten out the system.” This Blue Cross/Blue Shield pioneered bundled payments when most payers were just talking the talk.
Insurers in general are becoming alert to the financial distress caused by rising premiums and deductibles. Understanding the financial as well as clinical effects of treatment may actually be good for patients. However, innovation here may require patients to trust insurers with more personal data than they have in the past. Insurers are also large, slow-moving institutions that can take years to move an idea from a concept into the mainstream.
Empowering doctors
We now know that more and more doctors hate their work. Alarming numbers are quitting the profession–you can tell that by reading the KevinMD blog for a couple weeks–or at least opting out of the government’s safety net programs. Can technology lift the burdens of regulation and insurance from doctors instead of worsening them? Can the clinical experience be redesigned to favor doctors?
Danny van Leeuwen of Health Hats, whom I met through the Society for Participatory Medicine, told me of a company called Herald Health that gives doctors control over system alerts. The innovation that makes this different from standard EHRs is the control given to the individual physician. When the vendor, the clinic, or the hospital determine what alerts are delivered, they tend not to be appropriate for the doctor’s workflow. Whether or not the imposed alerts are important, they tend to get ignored. Better to let doctors define alerts themselves and share the ones they like with other doctors, who can then choose whether to adopt them.
Empowering communities
Ever since running water was introduced into cities–and perhaps even earlier–the biggest gains in public health have come through, well, public health. Simple interventions could make a huge difference, such as housing the homeless or providing deliveries of fruits and vegetables to neighborhoods known to be food deserts.
Some modern efforts in public health were highlighted by Olga Elizarova and Samantha Dempsey in a keynote and panel. They pointed out that you can miss racial and economic disparities if you look at the city or state level. Data must be more fine-grained, highlighting differences between neighborhoods.
Education provides a crucial example of community-based intervention. There have always been expensive private schools that offer intensive one-on-one coaching and individualized learning plans. But some organizations, such as the Harlem Children’s Zone and the Northside Achievement Zone of Minneapolis (described by director Andre Dukes) apply these principles to at-risk children in deeply underprivileged areas. Such organizations bring in professionals to counsel parents and children alike. They partner with organizations that can provide evidence of successful interventions. The motto of the Northside Achievement Zone is “Every child can and will attend college.”
Like Gasco, whom I quoted earlier, Elizarova and Dempsey said their solutions don’t use apps. Our health problems are complex and embedded in communities, so the solutions must take communities into account. Furthermore, changes in housing, education, etc. take a long time and don’t offer fast, Silicon-Valley style returns on investment. Finally, designers who want to help communities need to recognize their own biases, coming as they usually do from privileged backgrounds relative to whom they’re collaborating with.
Like home-based treatment plans, public health plans require a lot of data. Traditional healthcare data is not enough.
HxRefactored squeezed a lot into two days. Some major catches, such as Aneesh Chopra and Bakul Patel (Associate Director of Digital Health for the FDA), offered keynotes. Attendees can take many lessons away from the conference–this article has focused on those that touch on empowerment throughout the system.
