Three reasons your app won’t work: Learning from underserved end users

While reading a recent blog in MobiHealthNews I was fascinated by what seems an obvious yet fairly recent acceptance that health care is about patient engagement. A few months ago, a start up founder pitched his idea about enabling access to his product in a low-income community. When I asked about customer feedback, he said he didn’t know how to reach them. Unfortunately, it wasn’t my first time hearing about an entrepreneur creating a solution for underserved populations without obtaining direct input from end users. As I discuss in a previous blog, people from low-income communities are not hard to reach. Understanding their perspectives on engagement requires face time, intentional listening and openness to designing solutions that incorporate the solicited information. The value in these interactions can not be overstated because the solutions may be non-traditional and counter to our own impressions about how health care services should be delivered.

Since I wrote that blog, I have had numerous face-to-face conversations about health and health care with low-income, underserved people. We’ve talked in grocery stores, libraries, on public transportation, a shopping mall, a Metro PCS outlet and in my role as a clinician and medical director of DC Medicaid. The goal of these conversations is to hear their perspectives on health care, understand if and how they use technology, specifically phones, and their receptivity to using it for health-related engagement. These conversations are a first step toward building a series of sustainable and scalable solutions to address the health needs of low-income, underserved populations on their terms, not ours. Our work is just beginning but in the meantime, here are the three most important things we’ve learned thus far:

1. Apps won’t cure all that ails us. A recent article in MobiHealth highlights the astonishing volume of recent financial investments in health solutions. Many, if not most, require an app. While research shows cell phone ownership is at an all-time high in low-income communities, reliance on apps to reach consumers will not achieve our desired level of health care engagement. We learned many people with prepaid phones connect to the Internet via 1G and 2G networks, have less phone memory and therefore, often forego apps. We also verified the least common tech communication denominator is a tremendously underutilized digital health tool — texting.

2. Confusion and mistrust are driving low patient engagement. Many perceive our health care system as unfriendly, marginalizing, intimidating and disrespectful. Health care facilities are to be avoided. Consequently, they are satisfied with situational care like visits to the emergency room (ED). A visit to the ED minimizes their engagement with the health system, is perceived as on-demand, comprehensive care and allows them to access care on their terms when they decide a health issue warrants intervention. Foremost, an ED visit is not accompanied by the attachments, expectations, time or energy involved in maintaining a steady provider relationship. As discussed in a recent Washington Post article, unnecessary ED usage is among the most relentless and costly pain points in our health care system. Yet the latest solutions like varieties of integrated care coordination, while effective for some, rarely address the motivations, beliefs and distrust that discourage consumers from engagement.

3. Failure to effectively communicate exacerbates low health literacy. Many spoke about the language of health care and how difficult it is to understand provider instructions. Hence, people often seek health information elsewhere. As I discussed at a TEDx MidAtlantic, the ‘go to’ and trusted source for health information is often friends, family, television and conversations overheard in public places — the grapevine. Some use their phones to seek health information but these inquiries often inflame rather than mitigate confusion and lead them right back to the grapevine.

Overall, these conversations on the street suggest we are building things people don’t want, for engagements and relationships they have little interest in. This is likely a tough pill to swallow for those who believe better care coordination, clinic and hospital-based technology and greater fluency with and use of “big data” will ultimately lead to health care transformation, cost savings and improved health outcomes. Based on our discussions it seems many in the health tech community are are missing the mark.

In the year ahead PPH, Inc. will seek collaboration to apply the lessons we are learning from the community. We believe it is possible to build and test health literacy and engagement solutions that deliver health care the way people want it — not on our terms, but on theirs. If you’d like to explore partnership with us we’d love to hear from you. Alternatively, just follow along. Sign up for our newsletter and we will keep you updated about our progress in 2018.

Skyping In The Hood: Misperceptions About Health IT Strategies For The Underserved

Three years ago, one of my patients asked, “Doc, why can’t we talk on the computer?”

The question caught me off guard. In 17 years as a doctor for low-income Medicaid and uninsured people, it was the first time a patient expressed interest in swapping in-person visits with technology. He had moved 40 miles away from the clinic but didn’t want to change providers.

When I told him a FaceTime or Skype visit was not feasible, he then asked if we could talk on the phone or text because he wasn’t working, and this would allow him to spend less on gas. Although intrigued, my inability to meet his needs made me feel inadequate. I wondered how many other people like him wished the same but had never mentioned it.

After that visit, both in the office and on the street I found nearly unanimous agreement about people’s desire to communicate with health care providers using cell phones and the Internet. The few who preferred clinic-based visits, perhaps coincidentally, were either elderly or lived alone and felt socially isolated.

I shared this experience with a few health policy and opinion leaders. Could we transition to health IT solutions for follow up visits and perhaps even to keep people out of the ER? The consensus response was, “Do the poor have access to technology and the internet?”

These responses are not dissimilar from those I received in 2005 when I proposed conducting a computer-based research study for the CDC among prisoners. Seasoned researchers were skeptical and asked, “Are prisoners able to use computers?” “Aren’t you worried about literacy?” The computerized survey was welcomed by the participants and we encountered few, if any challenges with literacy. The skepticism, even now, represents a persistent knowledge gap between decision makers — funders, scientists, researchers, policymakers — and the community.

Research data show nearly 80 percent of persons from low income households use cell phones to text and this number increases annually. The data are also consistent with my experience. Nearly all of my patients have phones and in recent years we have used this strategy to locate and stay connected with many of them.

Whether on the bus, subway, grocery store line or walking down the street, it seems everyone is texting, staring at or talking into a device, even in our poorest neighborhoods. Yet, IT-based health care strategies are exploding everywhere except in low-income communities where, ironically, much of our highest cost health care is centralized. When will we make it a priority? I am convinced the community is ready — even if we aren’t.

This post was published on Huffington Post.

Failure of the AHCA: Is there a reason to rejoice?

Over the last 24 hours many have expressed jubilation over the Republicans’ failure to pass the American Health Care Act. As a physician and health advocate, I see little reason to rejoice because the dissent marshaling the failure was primarily from those who wished to gut the bill even further. This means the next iteration — and I am sure there will be a next — is likely to be even more restrictive. Most people don’t appreciate the value of the Affordable Care Act (ACA) because we don’t hear about its full impact in the media. Instead we only hear about skyrocketing premiums and Medicaid ‘hand outs’ for the poor. Did you know Medicaid pays for nursing home stays, care for the disabled and working families with children who can’t afford to buy from private insurers like Humana and Aetna? Did you know Medicaid also covers health care costs for many our nation’s children? We must protect these assurances of health care. However, I see a few major challenges in doing so:

  1. The messages controlling the narrative, i.e. “It’s a disaster”, “bad health care”, etc. are severely imbalanced. In addition to not only being about the poor, the ACA is not the culprit for delivery of so-called ‘bad health care’. This characterization is about the high cost of premiums for an unknown number of people. I’ve had many patients insured for the first time through the ACA and I take issue with anyone believing we delivered bad care. Citizens who’ve benefitted from the ACA must speak out to help balance these messages.

2. Insurers are responsible for unfairly raising premiums to stabilize profits and no one, including the public, is calling them out on it. Insurance companies are a powerful lobby so why would Congress regulate them more to protect Americans from unfair premium hikes?

3. Numerous people have told me, ‘I don’t want government mandating what I can and can’t do.’ This is interesting to me. Do you pay taxes? That’s only one example. What about home owner’s or car insurance? You can’t buy a house without mandated insurance. What happens if you’re caught driving a car without insurance?

Our problems are often rooted in our inability to compromise and look out for each other. This is no different. Ultimately we have to hold Congress accountable for representing us. If the narrative you’re hearing about the ACA doesn’t represent you- that’s a problem. If the narrative you’re hearing about the ACA ONLY represents you- that’s a problem.

Let’s not rejoice until we have found a better solution.

This post was originally posted on Medium. 

Hair Before Health: How The Beauty Industry Is Fueling The Obesity Epidemic

A few weeks ago I entered an elevator with my bike helmet. A gentleman noticed the helmet and commented, “That is great you ride a bike. I wish I could get my wife and daughters to exercise. I want them to learn to swim but they don’t want to mess up their hair.” I asked him what he thought the solution might be. He replied sarcastically, “I don’t know. Water that’s not wet?” He chuckled as he exited the elevator, but the conversation lingered, and I thought, “The beauty industry is fueling the obesity epidemic in black women.”

Black women have the highest rates of obesity in the U.S., and four of the five leading causes of death in black women are linked to obesity. Yet, for many of us, it seems our hair is more cherished than our health. The history and emotionally complex relationship between black women and hair has been highlighted in a controversial film that set social media ablaze with kudos and criticism alike. However, as a medical doctor who for over 20 years has witnessed the health impact of inactivity, our behavior is of great concern to me and continues to weigh heavily on my heart.

Images of black women’s hair

A few years ago when we opened the Community Wellness Collective (CWC) in the most underserved, under-resourced residential area in Washington, D.C., we struggled to fill our exercise classes. We established the CWC because over the years, my patients with chronic health conditions told me they wanted to exercise but either had no where to go nearby, could not afford it or needed assistance to get started. Our wellness instructors, on a mission to serve and volunteer their time, would often traipse across the Anacostia River to an empty room. Consequently, I began to casually inquire about reasons for the lack of participation at CWC despite its location in a community with some of the nation’s most glaring health disparities. I learned a lot, but the most disconcerting reason was related to hair. I was told of associations between self-confidence and self-image and hairstyle and how class times needed to coincide with calendar appointments with the hairdresser. If a person had an appointment on Saturday morning, the best time for a class would be on a Friday night when she had no plans to go out that evening. A few women expressed their desire to exercise consistently but were conflicted by the financial burden associated with frequent beauty shop appointments. I was told, “It costs too much.“

Indeed, it costs too much. The long-term impact of prioritizing hair over health will likely bear substantially greater costs associated with preventable diseases, long-term physical disability and quality of life. At a time when obesity rates in the nation, and strikingly among black women, are stubbornly high, it breaks my heart to be reminded the extent to which beauty and hair obsession are so engrained in our psyche and linked to self-worth they continue to drive our choices about health and wellness behaviors. We have the tools and information to combat obesity and other preventable diseases. But amidst the ubiquity, power and influence of the beauty industry, I wonder if we stand a chance. Do we? Let me hear from you.

This post was originally posted on Huffington Post.

Talking About HIV: Can We Get a Little Help From Visible Friends?

Last month during a patient’s visit, I was reviewing the demographic sheet in his chart and noticed he’d listed his emergency contact as:

Daenerys Targaryen
2829 King’s Landing
King’s Landing, Westoros

When I asked him about it, he laughed because he was surprised I’d caught the quip and understood the reference. She was the character he most admired on Game of Thrones. We talked about the show for a few minutes and as the moment of levity passed, his smile faded because I wanted to know why he’d chosen to use a fictional HBO character as a next of kin in an official health record. He paused and hung his head in silence. I knew his silence meant he was still struggling with his diagnosis and worse, he probably hadn’t told anyone. A tear fell as he told me he wasn’t ready for people to know he was HIV-positive. I know this reaction well. I’ve written about it before. It’s stigma and it’s our elephant in the room. It’s looming large and threatening to doom progress toward ending the HIV epidemic. Stigma discourages people from wanting to know their HIV status. It causes disengagement from health care. It results in hiding, shame, embarrassment and isolation. As trite as it sounds the solution is talking. We have to talk about HIV because talking about a thing helps normalize it. But we don’t.

Someone recently asked me why HIV remains so highly stigmatized and why people still know so little about HIV and its treatment advances. As I pondered the question I realized it’s because our society stopped talking about HIV 20 years ago. Consequently, our HIV psyche is stuck in the 1990s — a time when HIV was highly stigmatized and largely perceived as a gay, white male disease. It was associated with gaunt and emaciated appearances and death. People remember a time when the treatment side effects could make you feel sicker than the disease itself. If we’d kept talking about HIV as a society, our perceptions would be that HIV is a chronic but treatable sexually transmitted infection.

When I talk to community about solutions to changing this perception, people often say our society doesn’t talk enough about HIV. We don’t. Churches don’t talk, schools don’t talk, artists don’t talk, athletes don’t talk, politicians don’t talk — because it means we’d have to talk about sex. It’s ironic — our society is obsessed with and accepting of images of sex in music, television and film, yet the subject is taboo in our most influential institutions: schools and churches. Many people and institutions are talking about HIV but to combat widespread stigma this conversation must spread beyond us and infused throughout society. Conversations about HIV must be integrated within discussions about other things we talk about, particularly within conversations about health. Even now, despite recommendations most doctors are not routinely screening for HIV during yearly physical examinations.

I was recently invited by a church here in Washington, D.C. to educate its members about HIV. Upon my insistence that each person in the audience find ways to strike up conversations about HIV, a woman asked me to give examples of how someone could strike up a conversation about HIV. I responded by role playing as if I were speaking to someone in a queue leaving church or in the grocery store check out line. The examples helped them understand but more importantly her question helped me see how difficult this challenge can be for people who don’t think about HIV everyday. That’s why we need help from visible people to get these conversations started. Alicia Keys has recently launched an awareness campaign. We need more of this! Imagine if Daenerys Targaryen were to spend a scene educating her minions about HIV prevention. One of my dreams is to meet with Chris Rock and convince him to embark on a comedy tour focused on health in America. I am convinced he can make anything funny. Because comedians have an amazing ability to entertain while educating, we could witness the shift we are seeking if more like him would educate society about HIV. Similarly, I dream of Scandal writers incorporating all the relevant messages in a single episode. That would be powerful!

We desperately need a sea change — something different. I am convinced these tactics would have tremendous impact. A few years ago, I saw a quote by President Richard Nixon posted in the Newseum that says, “The American people don’t believe anything until they see it on television.” I believe it’s true but I’d add… and on the radio and in the movies and on the Internet! When it comes to arts, theater and music, we are impressionable. This conversation has to become more mainstream. We’ve got to talk and we need more voices — visible voices. It sounds simple, but often the solutions to overwhelming problems only require a simple solution. It’s hard to get much simpler than this one.

This post was originally published on The Huffington Post 

U.S. Health Care Transformation: Thwarted By A Glaring Omission?

While scrolling news headlines, a ticker for a recent Washington Post blog by Philips‘The Changing face of healthcare’, caught my attention. As expected the article included discussions about our national shifts toward value-based health care and why doctors and our health care system must transition toward becoming more responsive and data-driven. As with many articles on this topic, it was devoid of the patient perspective — health care consumers. The direct patient perspective is chronically absent from deliberations about our health care system transformation and I believe this continued omission will ultimately thwart efforts to improve quality and reduce costs. Patient engagement is central to any strategy to transform our health care system. Why then don’t we consistently seek and incorporate direct patient ― particularly high-cost users’ ―  input about realistic approaches to health care innovation and transformation? What we would we learn if we did? I decided to chat about this with a few health care consumers.

During a health education session with low-income residents in Washington, DC, I posed a question to a room filled with middle-aged men and women, most of whom we would deem high-cost, high need users: ‘What would it take to convince you to stop using the emergency room and build a relationship with a primary care doctor?’. I learned three things. First, each of them had at least one negative interaction with the health care system which discouraged them from further engagement. They described dismissive doctors who make them feel as if they are on an assembly line and condescending and impatient health care staff who don’t actively listen to their concerns. Their comments applied to both inpatient and outpatient care. One person said, “Every person I know who went into the hospital sick, ended up dead. That’s why people don’t go”. These interactions and perceptions have eroded their confidence in our health care system as a place of compassion and healing. Consequently, for most of them, absent a dire situation, doctors and the health care system should be avoided.

Second, while they seemed aware of the relationship between preventive behaviors and good health, there was little personal acceptance of this connection when it came to theiractions and preventing disease. For example, they shared stories of people they knew who delayed care for diabetes resulting in leg amputation yet none of them had recently been screened for diabetes nor had they consistently gone for annual physical or dental exams.

Finally, they told me in quite colorful language about their deep and penetrating distrust of the medical establishment. The discussion focused primarily on the relationship between doctors and the pharmaceutical industry. One person said, “It [doesn’t] matter why you go to see the doctor, you’re [going to] walk out with a handful of pills and the medicine makes you even sicker than you were before.” Another said, “the only reason doctors want to see patients is to get rich prescribing drugs people don’t need.” I was a bit astounded by the uniformity of their opinion that doctors are more concerned about pleasing and being compensated by the pharmaceutical industry than caring for them. Health care-related conspiracy theories and distrust are more pervasive than we acknowledge and are impacting patients’ willingness to engage in our health care system.

I have participated in countless public health and health policy conversations. The focus of these health care strategy and program implementation discussions have never been focused primarily on the types of issues raised by these consumers. Whether clinicians, policymakers, innovators, researchers or financial overseers, patients are our raison d’etre and their buy-in is imperative. Therefore, continued omission of their voices will thwart our progress. Addressing their feedback is daunting but we should not dismiss their concerns and suggestions because the solutions seem impractical. Until we strengthen our collaboration with health care consumers, directly acknowledge and consistently incorporate their perspectives into our strategies from conception to implementation, the transformation we seek will continue to elude us for decades on end.

This post was originally posted on The Huffington Post

Addressing HIV/AIDS in 2013 and Beyond: Why the Future Demands Its Integration Into the Chronic Diseases Spectrum

In 2009, while I was on the medical faculty at Howard University, a 61-year-old, diabetic woman was referred to me by her primary care doctor. She was baffled about why she needed to see an infectious diseases doctor. During her hospital stay for intractable diabetes, per CDC recommendations she was screened for HIV but her doctor did not inform her about her new diagnosis. As frustrating for me as this was, I was thrilled she was referred for care and applauded the doctor for testing a 61-year-old woman for HIV. However, by the time I met her, HIV had severely damaged her immune system. She had AIDS. Had she been tested years earlier, this damage could have been avoided by early administration of medication.

Expectedly, once she began medication, HIV became the least of her worries. She began to feel better and consequently over the last four years has gained nearly 100 pounds. Because the HIV infection is completely controlled — her virus is undetectable — every visit we spend less than five percent of the visit time discussing her HIV status. The remaining 95 percent of the time is spent addressing one or more of the following issues: nutrition, strategies to increase physical activity, medication adherence and disclosure of HIV status. She isn’t unique. My recent visit with her is a poignant illustration of why HIV prevention, care and treatment should be integrated into the traditional model of chronic diseases’ prevention and management. Shifting our view of HIV to one of a chronic disease will reduce ongoing disease transmission because its integration into a holistic approach to health promotion and healthcare will reduce the stigma associated with the infection.

Any HIV provider across the country will agree the vast majority of HIV-positive persons on treatment are not medically suffering from HIV. Instead many suffer from the same environmental challenges as the rest of our society. They are often diabetic, hypertensive, sedentary and overweight. This reality has forced the emergence of patient-centered medical homes for HIV-positive people.

It is a model of care that is effective and expected to expand under implementation of the Affordable Care Act. At our clinic in southeast D.C., we have integrated a patient navigator into our clinical team. The navigator’s role is to serve as an educator, confidante and facilitator of entry into care to ensure a newly diagnosed person is linked to our services within 24 hours. Oftentimes, this clinical linkage happens in minutes because the healthcare navigator is available to immediately walk to the person’s location and begin a discussion about their healthcare. We implemented this process because the embarrassingly high rates of patients lost to health care required urgent attention. I suspect a review of primary care engagement for other chronic diseases like diabetes, cancer and heart disease would show similar concerns. Thus this model we have adopted for HIV care and treatment deserves consideration for all chronic diseases, not only HIV because it will reduce costly and inappropriate emergency department utilization and will foster sustainable relationships between patients and healthcare providers. Our clinical quality review demonstrated the value of the immediate linkage by a navigator because the interaction leads to better long-term health outcomes and consistent engagement in healthcare. Integrating HIV disease management into our conversations about and strategies for addressing chronic diseases would be a public health game changer — not only medically, but socially. In fact, doing so would assist in answering the White House’s call for strategies to reduce healthcare disparities.

HIV lingers because there aren’t enough people thinking and talking about it in medical institutions and in the community. And when we do, it is in isolation — within the HIV silo. This lack of attention and silence exacerbates stigma and shame associated with the diagnosis, which in turn discourages disclosure of HIV serostatus. Above all it discourages testing among patients and sadly, healthcare providers.

Consider the actions of the healthcare provider described above. The patient had been in care for diabetes for over 10 years, yet HIV was only considered when she was admitted at a medical facility with a routine HIV screening policy. Had this provider ever discussed her sexual history? If not, why not? Why didn’t the provider discuss the diagnosis? More importantly was the provider aware of the treatment advances for HIV infection and that the majority of new HIV cases can now be effectively managed by a trained primary care provider? Addressing the HIV epidemic will require much more than promulgation and perpetuation of recycled messages, program strategies and silos. As the CDC has been reporting for nearly two decades, we have yet to move the needle on the rate of new infections. We can. And I believe the answer is chronic diseases integration.

This post was originally published by The Huffington Post

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