SMART CHICAGO IS MOVING!!!

Good News!!! The Smart Chicago team is moving and now will be co-located with the City Digital Team at UI Labs. As such, our individual emails will be changing to:

Kyla Williams           kyla.williams@uilabs.org

Sonja Marziano       sonja.marziano@uilabs.org

Denise Linn               denise.riedl@uilabs.org

Leslie Durr                 leslie.durr@uilabs.org

Our new mailing address is 1415 N. Cherry Avenue Chicago, IL 60642 and general phone number is 312.281.6900.

Please check our website at www.smartchicagocollaborative.org or follow us on twitter @smartchicago for more updates.

We appreciate your patience during this time of transition.

Design Thinking Raises Patients’ Profile to Rehab Health Care Access

At BarnRaise 2015, Mark King collaborates with the Thresholds mental-health agency on outreach to teens.

At BarnRaise 2015, Mark King collaborates with the Thresholds agency on outreach to teens.

When Chicago technologists diagnose health issues, they turn their attention to how patients and practitioners make decisions.

“It’s always important to understand the domain,” says ThoughtWorks user experience designer Bridget Sheerin. “The classic example is, you try not to build something for which there isn’t a problem.” A less obvious trap, she says, is building great technology that can’t or won’t get used in the field.

The Illinois Institute of Technology’s design institute focused health and tech teams on patient interactions in two days of brainstorming Oct. 13 and 14 at its BarnRaise 2015 “maker-conference.” Teams presented their solutions to a health technology crowd at Matter, the Merchandise Mart health-care incubator.

“I was amazed at how effective the conference was at bringing people up to speed about something they knew nothing about,” said Ronald Grais, director of the Thresholds mental health agency. Consultant Mark King of Toad & Tadpole suggested ways Thresholds could encourage peer interventions for troubled teens. Grais plans to test them immediately in schools and community programs.

The 13 teams addressed process and strategy issues as well. Smart Chicago Collaborative anchored one team, working with the Design Concepts agency to build patients’ health and computer literacy.

BarnRaise 2015 partners present their work at the Matter health-care incubator.

BarnRaise 2015 partners present their work at the Matter health-care incubator.

IIT matched software developer ThoughtWorks with Janus Choice and its Virtual Liaison app, which refers hospital patients to long-term care providers. Janus chief technology officer Daryl Palmer says ThoughtWorks brought experience in coaching technologies that complemented Janus’ development talent.

“We wanted to make sure we were looking at the social and cultural mindsets of users at final discharge,” Palmer says. “Patients can’t go home, they have to go to a skilled nursing facility, and we have to explain where they are in the process.”

Janus wanted a better handoff for accident victims, for whom the diagnosis is still sinking in. “We tried through a design process to understand what that experience is like for a patient and a nurse,” says Sheerin. “It’s not about building a prettier interface but understanding the entire journey they go through.”

The team interviewed nurses on how they used the iPad app to locate intensive rehab or continuous care resources. “The nurses are under extreme time pressure to get patients out of the hospital. They need patients to comfortable with the choices they’re making. The device makes the narrowing-down process a lot faster for the patients, which cuts cuts down on the time pressure on the nurses.”

More often it’s nurses or family members using the tablet app to find follow-up care, not the patients themselves. The result has to please all parties, including the hospitals paying for the app. They expect a payoff in better use of their own beds and lower readmission rates.

ThoughtWorks suggested video and other tools to connect nurse recommendations with doctors’ orders, and updates on patients’ rehab progress to keep nurses engaged.

The YMCA of the USA approached rehab from a different angle. It worked with Rêve Consulting to structure pilot programs bringing joint replacement patients into local gyms and swimming pools to shape up before surgery, as well as to recuperate afterward.

Chicago health providers facing widespread issues used BarnRaise partners to plan a local response. The American Medical Women’s Association and the Mad*Pow agency worked to spread stroke awareness.

The BarnRaise collaborators decided they must spread the word about about stroke symptoms to a younger audience, who could act quickly if a family member is stricken.

“Trust is an issue,” says Heather Beckstrom, stroke program coordinator for Mount Sinai Hospital Medical Center. Immigrants fear deportation, while minorities expect a struggle to get the immediate care that can save stroke victims’ lives. “How do you get into a community where there is distrust?”

The solution was to build on relationships with community activists and organizations like the Chicago Housing Authority. “It gives us a different strategy and outlets to tap into,” Beckstrom says.

Chicago Hospitals Win $8.75 Million to Launch Data Network

A data-sharing network of 10 Chicago hospitals could make medical research more reliable and less expensive. It’s a big-data project that keeps patients records locked up, but lets researchers search for trends.

An $8.75 million grant will fund the three-year launch of the Chicago Area Patient-Centered Outcomes Research Network. Awarded July 21, the contract taps money set aside in the Affordable Care Act for medical research.

Terry Mazany

Terry Mazany, The Chicago Community Trust

“What’s unique about CAPriCORN is that it brings together these 10 institutions that historically have been competitors, or at least disinterested in each other,” says Terry Mazany, chief executive of The Chicago Community Trust and the project’s principal investigator. (The trust is also a Smart Chicago funder.)

“This brings them together in a very formal organization across the entire region,” Mazany says, “with a patient population of upwards of 5 million patients potentially available for research, and in particular a patient population that is very diverse.”

The Chicago network and clinical networks in 10 other regions will allow health advocates to monitor even rare conditions and prove how well current treatments work.

Their first test will be Duke University’s nationwide study to prove whether taking children’s aspirin to prevent a heart attack is as effective as an adult dose, which carries potential side effects. Researchers in Chicago and five other cities will study 20,000 at-risk heart patients, a large sample size that allows fine-tuned analysis.

Richard Kennedy, Loyola University Chicago

Richard Kennedy, Loyola University Chicago

“They contacted us and said, you’ve got the numbers that we need, would you be able to participate?” says Richard Kennedy, vice provost for research and graduate studies at the Loyola University Chicago health sciences division in Maywood. “We had a significant number of patients that would fit nicely in the cohort.” Kennedy and Frances Weaver are Loyola’s head researchers for the data network.

Hospitals now are collaborating on how to conduct the trial and manage the data. Other studies will track obese patients after bariatric surgery and children on antibiotics to treat immune disorders. Mazany sees Chicago hospitals as active participants. “When the national level is looking at need and expertise in an area, we have a far broader and deeper bench than any of the other systems,” he says. “That’s a real strength.”

In a $7 million startup phase, CAPriCORN built out a system to connect the medical centers without exposing patient information. The next phase explores its real-world uses, as well as a funding model that puts patients’ interests first.

The aspirin study “is going to answer a question of great clinical concern,” Kennedy says, “but the importance is truly we’re testing the infrastructure we’ve been building for the past 18 months. All right, you’ve put together what seems to be a very impressive informatics system with all the security we would want for our patients. Now let’s see if it works.”

Privacy starts with keeping personal identifiers off the network. Researchers query data in a small, separate access layer, with names and addresses reduced to a cryptographic hash. “We’re currently having it validated by a security firm that’s one of the top in the region to make sure it protects subjects,” Kennedy says.

A novel algorithm links the anonymous patients’ records across all hospitals, giving public health researchers a more reliable count of how common their condition is and where to find hot spots. “You have the ability to look for rare diseases and aggregate an adequate sample size to do statistically significant studies,” Mazany says.

“There’s a next step in some of the research designs,” he adds. Instead of just counting how many patients share a condition, studies that pass an ethics review will reach out to them.

“Let’s say you’re looking at exploring treatments for sickle cell, and you’re specifically looking at teenagers as a population,” he explains. “Then you can do a query to identify the total population and where they’re distributed among institutions.”

Hospitals then can ask patients to join clinical trials that will log treatment details. “It still protects patient privacy but is able to more efficiently identify candidates for the research study,” Mazany says.

Researchers see the network as low-cost way to recruit trial subjects. “Instead of tens of thousands of dollars per participant, then it’s dollars per participant,” Mazany says. “You leverage the efficiency of large data systems so each researcher doesn’t independently have to enroll institutions.

“What makes this in someone’s interest? Lowering the cost of research, speeding up research, creating greater effectiveness. Those three standards are part of a health system that’s learning and evolving rapidly.”

The focus likely will improve data handling as well. “One interesting byproduct could be if there is unevenness across institutions that may become apparent,” Mazany says.

Research on the network will be subject to more thorough advance review. “It’s patient centered,” Loyola’s Kennedy says. “It includes a lot of patient input into the design of the study, the importance of the study to the subjects, the patients, the community.”

Like other clinical trials, research must pass muster with an institutional review board. Feedback also comes from a doctor-patient advisory panel that includes advocates for treating asthma, arthritis and other diseases.

“There’s also a pastor’s group on the South Side that’s very active,” Mazany says. The advisory group “totals about 30 people — it’s a pretty large group.”

The extra review should put important research on a fast track, and prime doctors and patients to follow its recommendations.

“Oftentimes research truly answers medical questions for the people that ran it, yet the results don’t get distributed and implemented as well as we would like,” Kennedy says. “We hope that by engaging the community and the patients – and the clinicians who are taking care of those patients – the results will be implemented much more quickly, because they will be designed in part by input from these subjects.”

The aspirin study also will look into the benefits of mobile health devices. A University of California-San Francisco team will give some participants apps to send reminders and record activity. In Chicago, Kennedy says investigators are considering how they might manage frequent readings from blood sugar monitors in a diabetes trial.

The network is “more open and accessible for that type of data collection,” Mazany says. “Who knows where that will lead as far as the efficacy of the research?”

Hospitals will have to consider a long-term funding model after federal funding runs out in 2018. “We’ve been contacted by an industry sponsor, who would very much like to think that there was a Chicago network they could access without working individually with the 10 institutions,” Kennedy says “That’s going to take some time to create that kind of trust.”

Mazany wants to make sure patient advocates can propose research on the network, but they’ll need to be thoroughly vetted. “They’ll come up with their own queries, but there won’t be an open-data hack night,” he says. “There are just too many privacy and security concerns with these types of data. But in a sense, the hack night would be communities and patients identifying questions that could interrogate data sets through the mechanism of the queries.”

The network has no data portal, but researchers will be encouraged to find ways to show their work outside of medical journals. That may include websites such as Smart Chicago’s Chicago Health Atlas, a past collaborator with hospital networks.

“The Health Atlas is an example of a good partner both on the front end of identifying important trends in the data that can help to frame priorities, and then on the back end as a distribution system for communications outward,” Mazany says. “I look for the Health Atlas to be a very valuable partner, but none of this has been formalized.”

The big-data approach also might spread beyond hospitals. “I don’t know how that’s going to play out,” Mazany says. The network already includes community health centers that store electronic health records centrally. He envisions opening up the network to more health providers.

“That line of thinking is an exciting frontier,” Mazany says. “Right now everybody is up to their necks in alligators draining the swamp. The analogy with Walt Disney envisioning Disney World and Florida in the midst of the swamp I think is appropriate here. We have a vision and are laying the infrastructure to have arise a Magic Kingdom.”

Smart Chicago and the Concept of “Patient Centered”

Health Data LiberationWe have a number of health programs here at Smart Chicago, all of which are run by my colleague, Kyla Williams. In working on these projects, I’ve come across a number of intriguing concepts, just like one would in any sub-speciality. Chief of these concepts, for me, is “patient-centered”.

To me, a phrase like this is a tell. Any time an industry, company, or organization starts talking about “user-driven”, “customer-focused”, or “patient-centered” strategies, it is an indication that they’ve not been driven, focused, or centered in that direction in the past.

I’ve spent the majority of my career in the world of developing Web sites. In that sub-specialty, the idea of being focused on users is pretty much all there is. If you don’t have users, if you’re not making something that appeals to them and serves their needs, you’ve got nothing.

I don’t have any particular insight into the healthcare industry, since I’ve never worked in it. I can tell you from personal experience as a consumer of healthcare and as a general observer of pop culture, however, that I’ve never felt that patients were at the center of the experience.

Patient portals seem designed to deliver as little information as possible and optimize for medical professionals. Exporting information to give to other caregivers is cumbersome. Integration with email is weak— you have to log in to the system to get even the most innocuous information, like the details of a visit you just scheduled over the phone.

In 2015, we are embarking on and expanding a number of initiatives designed to get us deeper into the patient-centered trend. Our CUTGroup methodology is a recognized as a leading way to gather and act on the feedback of regular residents. The Smart Health Centers model, where we help place trained health information specialists in clinics to assist patients in connecting to their own medical records and find reliable information about their own conditions, is deeply patient-centered. Our Health Data Liberation Meetup Group is at the conceptual forefront for patient control

We think we have a lot to offer, and we’re excited about the work to come.