By Laurine Lassalle • Jan 21, 2020

Photo credit: iStock. 

When President Barack Obama enacted the Affordable Care Act a nearly decade ago, the broad aim was to improve health care access. One of the pieces of that legislation: requiring doctors to use electronic health records. 

Electronic health records, which include health histories, prescriptions and test results, are now commonplace—but not everyone has access to them.

Apple users are the only ones who can access their health records on their phones. CommonHealth, a new app for Android users, wants to change that and tackle health disparities in the process.

“Android users tend to earn lower incomes, so medical centers using the Apple app are cutting out (a large fraction of patients),” said Ida Sim, a professor of medicine at UC San Francisco, where she leads the team piloting the app. 

Sim and UCSF colleagues collaborated with Cornell Tech, the nonprofit Commons Project, and two other nonprofits to develop CommonHealth, which will be available to download for free in the coming months. 

The app will allow patients with Android phones to safely store their health records on their devices and tell them how other apps are treating their stored health information. Experts also say it’s a step toward addressing the health-information access gap between Android and Apple users, because it will make medical records universally available—no matter the users’ smartphone brand. 

Apple launched Apple Health Records two years ago, in January 2018, as part of the Apple Health app. The app allows users to access their immunization records, prescriptions, test results, documented allergies and other health information collected through their doctor’s patient portal. 

The Office of the National Coordinator Health Information Technology reportedthat from January to May 2018, about 60 percent of the people who were offered access to online medical records viewed their records at least once on their smartphone or tablet.

Elaine Khoong, an associate professor at UCSF and primary care research fellow at Zuckerberg San Francisco General Hospital, said that most of her patients express interest in accessing their health information online. But she said that even with apps for both Apple and Android users, there will still be barriers in the way. 

“Our patient population is overwhelmingly a lot of patients with limited health literacy, who are low-income insured on Medicaid, racial-ethnic minority groups, and there’s a certain number of limited English proficient patients as well,” she said. 

Khoong, who is conducting patient interviews on usability, testing and perceptions about CommonHealth, said she is preparing to test the app with Spanish and Chinese speaking patients in the future. 

Accessing test results requires some level of health knowledge to understand what their results mean, said Adrian Aguilera, associate professor at UC Berkeley’s School of Social Welfare who conducts research on mobile health technology. This can discourage “patients from looking at their electronic health records,” Aguilera said. 

Studies have shown that the smartphone market is almost equally divided between Apple and Android, but iPhone users are more likely to earn higher incomes than Android users. 

A 2013 Pew Research Center study showed that 40 percent of cellphone owners who earned $75,000 or more annually had an iPhone, while 31 percent had an Android. Only 13 percent of those who earned less than $30,000 owned an iPhone, compared with 28 percent at this income level who owned an Android. 

Because Android phones are cheaper, they are the only brand available through the “Obama phone” or Lifeline Assistant program, which gives free smartphones to low-income Americans.

Moreover, while Hispanics and non-Hispanic whites were as likely to own an Android as an iPhone, 42 percent of African American cellphone owners said they had an Android.

Apple phones, said Khoong, serve “a really specific segment of the population.” 

About 400 health care centers in the United States already use Apple Health Records—and the number keeps growing. Apple and the US Department of Veterans Affairs, the largest medical system in the country, which provides service to more than 9 million veterans throughout more than 1,000 facilities, announced last month that veterans can now access their health records on their iPhones. But those who have an Android will still have to wait for CommonHealth. 

For some, apps that allow medical information to be stored on phones, whether Apple or Android, raise privacy and security concerns, especially whether the tech giants can see and use this medical information. Recent data breaches make those personal data even more vulnerable. 

JP Pollack, co-founder of the Commons Project and a CommonHealth project collaborator, said that the CommonHealth app would ask third-party apps to disclose their policies. The app will evaluate and inform users about their safety to help them make their own decisions. CommonHealth will also use encryption to secure health records. 

But “once the data goes to another application, you no longer have control over it,” Pollak said. “It could be sold anywhere.” 

That’s because the Health Insurance Portability and Accountability Act (HIPAA), which makes health care providers and insurers keep medical information private, doesn’t protect a patient’s information once it is stored on their phone.  

Pollak said that patients, privacy experts, researchers and developers would work together during a workshop in February to finalize the CommonHealth app and address final issues regarding data privacy and information sharing.

By Anne Daugherty • Nov 28, 2019

Addison Rose Vincent, center, leads a workshop for transgender and gender-nonconforming teens near Big Bear Lake in San Bernardino County. Vincent is part of a statewide research initiative called Reimagine Lab, which deploys strategies from the product design world to identify the root causes of family violence. Photo courtesy of Margot Anderson.

Addison Rose Vincent set a transgender pride flag and cans of paint on a table overlooking Big Bear Lake in San Bernardino County last July.

Vincent, an LGBTQ+ activist, was leading a workshop for transgender and gender-nonconforming teens. LGBTQ+ is a term that encompasses marginalized sexual identities and gender identities. 

The idea was to help these youth develop a sense of identity in a creative, inclusive and gender-affirming space. The teens, who sat nervously at the table, were painting family portraits on pride flags. 

For many of the participants, the exercise was also a way to begin healing from the trauma of domestic abuse.

Vincent, who is 27 and lives in Los Angeles, had designed the workshop as part of a statewide research initiative called Reimagine Lab, which deploys strategies from the product design world to identify the root causes of family violence and find new ways to prevent it. Vincent, who identifies as transgender and uses they/them pronouns, is an educator, LGBTQ+ activist and community organizer. 

Beside the lake on that hot summer day, a 14-year-old shared a story about how he was rejected by his parents for being transgender. Vincent listened. The teen told them how his grandparents, who had taken him in, had both died last year. 

But the teen found hope in his grandparents’ story. His elders had immigrated to the U.S. and became successful, despite many challenges, the teen shared. 

“If they could do that back then,” he told Vincent, “I think I can make it, too.” 

Applying ‘Human-Centered Design’ to Domestic Violence

Vincent is one of Reimagine Lab’s 16 Californian fellows, who come from diverse personal and professional backgrounds. The fellows have spent the last year researching new ideas and developing prototypes to prevent multi-generational cycles of family violence. 

Reimagine Lab applies principles of “human-centered design” to domestic violence. The design theory—which yielded the first Apple mouse, for example—champions the end users, or in this case, domestic violence survivors and perpetrators, focusing on their needs and ensuring solutions are appropriate for them. 

The lab’s fellows formed five teams—each using a different approach to domestic violence prevention. Vincent is part of the History Reimagined team, along with Ana Rosa Najera, a licensed clinical social worker, and Devika Shankar, who supervises the STOP Domestic Violence Program at the Los Angeles LGBT Center. The team’s approach was inspired by a 2001 study by Emory University researchers Marshall Duke and Robyn Fivush, who found that youth who knew more about their family histories were more resilient and had higher self-esteem, greater family cohesiveness and a lower incidence of behavior problems.

In addition to the Big Bear Lake summer camp activity, the group held workshops in September for students at a middle school in Los Angeles. At an Indigenous Pride L.A. celebration in October, the team staffed a booth for transgender Native American teens. The teens painted their family trees on tiles, which they then placed together with others to form a larger community tree.

“The idea was that the kids needed to know their roots,” Vincent said, “before they could spread their branches.”

Not all of History Reimagined activities have gone according to plan. Initially the team underestimated the importance of earning the students’ trust—many weren’t comfortable speaking about sensitive topics until they had a chance to know the team better. As a result, Vincent and his group have opted to include teambuilding exercises up front. Teens have been more comfortable after that, and have shared their family and community stories through dance, poetry, public speaking and acting. 

Developing Resilience 

A Centers for Disease Control and Prevention report published in 2017 found nearly 33 percent of women and 27 percent of men in California will experience intimate partner violence, sexual violence or stalking in their lifetimes. The National Coalition Against Domestic Violence reports that one in 15 American children are exposed to intimate partner violence, and 90 percent of them directly witness the violence.

Transgender and gender nonconforming populations experience domestic violence at higher rates. The 2015 U.S. Transgender survey found that 54 percent of respondents had experienced some form of intimate partner violence, including acts involving coercive control and physical harm. Nearly a quarter of those responding experienced severe physical violence by an intimate partner, compared to 18 percent of the general population.

Violence among transgender people of color was even more prevalent. While 47 percent of all respondents reported experiencing sexual assault at some point in their lifetimes, 53 percent of African Americans and 63 percent of Native Americans had experienced sexual assault. 

Cases of domestic violence among LGBTQ+ youth are often unacknowledged, underreported or misreported, according to the 2006 Lesbian, Gay, Bisexual and Transgender Domestic Violence in the U.S. study. Youth are less likely to use or respond to domestic violence terminology, which has traditionally just described abuse between heterosexual people. First responders and therapists can also express bias and misunderstanding, keeping LGBTQ+ community members from accessing emergency services.

Reimagine Lab is funded by Gobee Group, an innovation design organization, and the Blue Shield of California Foundation.

Reimagine Lab fellows from around the state gathered in Oakland earlier this month to pitch their project prototypes at a demo day event. They hoped to secure funding to continue piloting their design concepts. More than 40 community members, sector leaders, catalysts and funders from California’s domestic violence arena were on hand to hear from the teams. Teams are meeting with potential funders and the lab will soon share the ideas publicly to ensure that others in the field hear about them.

History Reimagined mapped out a three-year budget for a school curriculum project, along with a transition strategy that includes lobbying state legislators, working with AmeriCorps and requesting federal funding. The team continues to pilot the program in southern Californian schools—and ultimately hopes to expand it across the state.

Vincent, whose activism stems in part from their own experience coming out as transgender, wants to help stop the intergenerational cycle of domestic abuse that affects LGBTQ+ youth.

Vincent remains hopeful the “curriculum will help these kids not only address some of this trauma,” but also develop resilience.