The Doctor's Computer Will Email You Now

After knee surgery, David Larson, 66, of Huntington Beach, Calif., experienced pain in a calf muscle. His answer to an automated email from the doctor led to the diagnosis and treatment of a potentially dangerous blood clot.

After knee surgery, David Larson, 66, of Huntington Beach, Calif., experienced pain in a calf muscle. His answer to an automated email from the doctor led to the diagnosis and treatment of a potentially dangerous blood clot. Heidi de Marco/Kaiser Health News hide caption

toggle caption Heidi de Marco/Kaiser Health News

A health care startup made a wild pitch to Cara Waller, CEO of the Newport Orthopedic Institute. The company said it could get patients more engaged with their care by automating physician empathy.

It “almost made me nauseous,” she said. How can you automate something as deeply personal as empathy?

But Waller needed help. Her physicians in Orange County, Calif., perform as many as 500 surgeries a year, managing large numbers of patients at various stages of treatment and recovery. The doctors needed a better way to communicate with patients and track their progress.

The California startup, HealthLoop, told Waller its messaging technology would improve patient satisfaction and help keep them out of the hospital. High satisfaction scores and low readmission rates mean higher reimbursements from Medicare. Waller was intrigued and decided to give the technology a try.

So far, she’s been surprised at patients’ enthusiasm for the personalized — but automated — daily emails they receive from their doctors.

“There’s a limited number of resources in health care. If you do 500 joint replacements in a year, how do you follow up all of those patients every day?” Waller said. The technology “allows you to direct your energy to people who need the hand-holding.”

Though it may sound like an oxymoron, “automating empathy” is becoming a catchphrase in health care. The goal is to help doctors stay in touch with patients cheaply and with minimal effort.

Automated empathy is a powerful draw for hospitals and other health care providers scrambling to adjust to sweeping changes in how they’re paid.

When empathy is automated, it looks like this.

When empathy is automated, it looks like this. HealthLoop hide caption

toggle caption HealthLoop

Whether the emails actually trigger an empathetic connection or not, the idea of tailoring regular electronic communications to patients counts as an innovation in health care — one that has the potential to save money and improve quality.

Companies like HealthLoop are promising that their technologies will help patients stick to treatment and recovery regimens, avoid repeat hospital stays and be more satisfied with their care. Similar companies that aim to improve patient engagement include Wellframe, Curaspan and Infield Health.

HealthLoop’s technology is being tested at medical centers that include the Cleveland Clinic, Kaiser Permanente-Southern California and the University of California, San Francisco.

How does it work? Doctors can send daily emails with information timed to milestones in surgery prep and recovery. The emails can ask patients or caregivers for feedback on specific issues that come up during recovery.

The doctors may write their own email scripts, as Newport Orthopedics’ physicians did, or use the company’s suggestions. An online dashboard helps doctors and administrators keep track of which patients are doing well and who might need more follow-up care.

A patient might see this message: “How are you? Let me know so I can make sure you’re OK. I have four questions for you today.” The answers to those questions can trigger a call from the doctor’s office.

One of those calls may have been a lifesaver for David Larson, a Huntington Beach retiree. After Larson responded “yes” to an email that asked if he had calf pain after knee surgery, he got a call from his doctor’s office telling him to come in immediately. An ultrasound confirmed he had a blood clot that could have landed him in the hospital — or worse. With treatment, the blood clot dissolved.

“There were times when it was like, ‘Oh brother, they’re contacting me again,’ but none of this would have been caught if it wasn’t for the email,” said Larson, 66. “So it was more than worth it to me. Now I’m back to walking the dog, surfing, riding a bike.”

How to keep patients like Larson from being readmitted to the hospital because of avoidable complications after a hospital stay has long been a vexing and expensive challenge.

Almost 1 in 5 Medicare patients discharged from a hospital — approximately 2.6 million seniors a year — must be readmitted within 30 days, at an annual cost of more than $26 billion, according to the Centers for Medicare and Medicaid Services.

For decades, hospitals had no financial incentive to keep patients out of the hospital after they were discharged. But under the Affordable Care Act, penalties were established for hospitals with readmission rates higher than the national average for certain conditions.

Also under the ACA, hospitals are financially rewarded for high scores on patient satisfaction scores and good performance on other quality measures.

The sea change is affecting doctors’ groups, either because they are part-owners in hospitals, as Newport Orthopedics is with Hoag Hospital in Newport Beach, Calif., or because they participate in risk-sharing financial partnerships with them.

With money on the line, hospitals and other health care providers may be willing to pay for programs like HealthLoop, if the tryouts prove successful. And you could see your own relationship with your physician change as a result, whether you’re on Medicare or not: HealthLoop is aimed at all patients, whatever the payment source.

Some experts worry that health care providers will come to rely too heavily on electronic communication as a cheap substitute for the hard work of improving the doctor-patient relationship and the quality of care that patients get.

“Automating personalized messages isn’t a terrible thing; we all get some of that in our everyday lives,” said Michael Millenson, a health industry consultant. “The real question is whether this kind of automated messaging is in conjunction with a cultural change in how doctors think about their patients or not.”

Health care providers have experimented, with varying success, with ways to prevent complications that can lead to readmissions, said Kristin Carman, vice president of health policy research at the American Institutes for Research.

Robocalls reminding you to take your medicine, for example, don’t seem to be very effective. And the new technologies don’t always address demographic, cultural and language barriers that can prevent patients from communicating with their doctors. For now, HealthLoop is available in English only.

Dr. Jordan Shlain, a San Francisco internist, said he founded HealthLoop because he wanted a simple way to keep track of his patients’ progress after a hospital visit or procedure.

“Every human has the same kind of trajectory of concerns and anxieties with regard to medical situations,” Shlain said. “You know your doctor can’t email you every day; you know your doctor usually will not call you. Now you’re in a world where your doctor says I’d like to use this system to stay in touch with you and guide you through your recovery.”

Dr. Thomas Vail, professor and chairman of the department of orthopedic surgery at the University of California, San Francisco would agree — up to a point.

With his UCSF colleagues, Vail is testing HealthLoop’s system with his patients, and the university will be evaluating whether patients who use it experience fewer problems.

UCSF helped create some of the language for the automated emails and has a financial relationship with the company, said Dr. Aenor Sawyer, who directs UCSF’s Skeletal Health Service and is a leader at the university’s Center for Digital Health Innovation.

While Vail thinks HealthLoop is potentially promising, he’s cautious about its role in his practice. “I don’t think it substitutes for face-to-face communication,” Vail said, “but it does help us collectively to not overlook something that might be important.”

This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California HealthCare Foundation.

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How Can We Prepare For A Graceful Death?

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Part 5 of the TED Radio Hour episode Rethinking Death

About BJ Miller’s TED Talk

At the end of our lives, what do we most wish for? BJ Miller is a palliative care physician who thinks about how to create a dignified, graceful end of life for his patients.

About BJ Miller

As executive director at Zen Hospice Project in San Francisco, BJ Miller helps patients face their own deaths realistically, comfortably and on their own terms. Through the work of Zen Hospice Project, Miller is cultivating a model for palliative care organizations around the world and emphasizing healthcare’s quixotic relationship with the inevitability of death.

Miller’s passion for palliative care stems from personal experience. A horrific accident in college cost him three limbs and nearly killed him. But that experience helped form the foundation of his empathy for patients who are running out of time.

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Texas Tries To Repair Damage Wrought Upon Family Planning Clinics

Five-month old Ronan Amador rides in a carrier with his mother, Elizabeth Mahoney during a Planned Parenthood rally on the steps of the Texas Capitol on March 7, 2013, in Austin.
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Five-month old Ronan Amador rides in a carrier with his mother, Elizabeth Mahoney during a Planned Parenthood rally on the steps of the Texas Capitol on March 7, 2013, in Austin. Eric Gay/AP hide caption

toggle caption Eric Gay/AP

For the last five years, the Texas legislature has done everything in its power to defund Planned Parenthood. But it’s not so easy to target that organization without hurting family planning clinics around the state generally.

Of the 82 clinics that have closed, only a third were Planned Parenthood.

Midland Community Healthcare Services Clinic in west Texas is open, and every day it’s three lines deep as women file in for treatment. The clinic’s 15 examination rooms go full throttle all day but can’t come close to satisfying demand. The numbers are harsh. In Texas, just 22 percent of child bearing age women who qualify for subsidized preventive health care treatment actually get it.

The latest family planning predicament began in 2011 when the Republican-dominated Texas legislature decided it was done once and for all funding Planned Parenthood. It eliminated funding for any clinic associated with an abortion provider even if the clinic itself didn’t perform abortions. In the process, the legislature ended up slashing the state’s family planning budget by two-thirds.

“And that turned everything on its head,” says Dr. Moss Hampton, a district chairman for the American Congress of Obstetricians and Gynecologists and a professor at the University Health Sciences Center in Midland.

Hampton says the legislature’s target was abortion, but the unintended consequence was that family planning clinics which had nothing to do with abortion, especially rural clinics, ran out of money.

“So you had programs that would help patients pay for physician visits, obstetrical care, gynecological care, pap smears. When all of that funding was removed and cut, a large number of women didn’t have the means to pay for access to those services,” Hampton says.

The Effects Of Closing Clinics

By 2014, 82 family planning clinics across the state had closed. The consequence was calamitous. In Midland, for example, when the Planned Parenthood clinic closed, there were two after effects: 8,000 well women appointments a year vanished, and so did the last place a woman could get an abortion between Ft. Worth and El Paso.

Kari White is one of the lead researchers at the University of Texas’ Texas Policy Evaluation Project. They’ve been investigating the statewide effects of the legislature’s family planning cuts.

“Teens obviously, when they lose access, they don’t have a lot of financial resources to go elsewhere for care so they may go without. Women who are not legal residents are in disadvantaged positions in multiple ways and even women who are making just a little bit over the cutoff for the women’s health program, $50 is still a lot of money out of your budget,” White says.

The researchers found that two years after the cuts, Texas’ women’s health program managed to serve less than half the number of women it had before. The legislature’s own researchers predicted the more than 20,000 resulting unplanned births would cost taxpayers more than a quarter of a billion dollars in federal and state Medicaid support. White says as the state has worked to rebuild its shattered network, the new providers don’t necessarily have the same capacity to do cancer screenings and IUD and birth control implants.

“A lot of the funding that has been allocated have gone to organizations that do not necessarily have the expertise or the necessary training to provide the types of family planning, contraceptive, preventive reproductive health care that the Planned Parenthood clinics provided,” White says.

The political backlash to the funding cuts was stout. So in 2013, the legislature essentially restored the money. But finding new providers, especially in the countryside, has been slow and difficult. Texas Health and Human Services Commissioner Lesley French runs the women’s health services program.

“The legislature wanted to make sure that no one, even if they were accustomed to going to a certain provider that was no longer a part of the state plan, that there was another provider that was willing and able to take and serve women. So that’s never an overnight process,” French says.

French says the state program is approaching the number of providers it had back in 2010. But in many regions of the state, there’s been little or no decrease in the level of unserved need. Texas continues to grow vigorously and a statewide doctor shortage compounds the problem. It’s not like already inundated medical practices are chomping at the bit to take on thousands of orphaned Medicaid patients. Commissioner French says they’re doing the best they can under the circumstances.

“I’m very cognizant of the needs one area of the state are not what the needs are in another area of the state. So what works in Houston, what works in Dallas, doesn’t work for Midland,” French says. “I’m really trying to recruit providers who can meet the people that we’re trying to serve.”

Aubrey’s Story

The state’s newest rendition of its women’s health program debuts July 1. In the meantime, rural Texans still scramble to find family planning services — and not just poor women. Aubrey, a student at Texas Tech, doesn’t want her last name used for reasons we’ll explain in a moment. But this last year, her senior year, her life changed.

“Yes, I’d met a boy. I decided to go and seek out getting on birth control,” she says.

About to become sexually active for the first time Aubrey did not want her birth control showing up on her parent’s insurance, so she went to the student health clinic. But there the doctor was difficult.

“I just wanted to talk to her and get some ideas on what would be best for me. And she was telling me that I needed to get on a certain one because that was my only option,” she says. “It didn’t really make sense. There wasn’t a health issue, and it was kind of odd she was fighting me on this.”

The doctor told Aubrey it would take several weeks before she could get her birth control. When the young woman asked why, the doctor suggested Aubrey was lacking in moral fiber.

“She actually asked me if I was in that big of a hurry to become sexually active,” she says.

Furious and humiliated, Aubrey left. And she says this is where things got difficult. The Planned Parenthood clinics in Lubbock had recently closed. When she telephoned the county clinic, she discovered the next available appointment was in April. It was January. Determined, she next called to Ft. Worth, four and a half hours away.

“Planned Parenthood really changed my life. Quite honestly, I don’t know where I’d be right now, if I hadn’t been able to get in at Fort Worth,” she says. “And so I’m glad I have the peace of mind now that I don’t have to worry about getting pregnant when I’m not ready.”

And this is why Aubrey doesn’t want her last named used — because she’s a Planned Parenthood supporter living in west Texas. It hadn’t been a problem until three months ago when a gunman attacked a Planned Parenthood clinic in Colorado Springs, a few hours to the northwest. A police officer and two Planned Parenthood clients were killed.

In Texas, the legislature seems determined that its robust anti-abortion politics will not further damage the state’s women’s health programs. But its battle against Planned Parenthood continues unabated. The state has ousted the organization from its cancer screening program, stripped it of state Medicaid money and is ending HIV prevention subsidies. Texas is becoming the model for other conservative states who’d like to defund all family planning clinics associated with abortion providers.

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Still Uninsured? Buy A Health Plan This Week To Avoid A Tax Penalty

The price of getting a health insurance card may seem expensive, but officials say the minimum tax penalty for remaining uninsured is $695, and could rise to more than $10,000 for wealthy families who choose not to get coverage.

The price of getting a health insurance card may seem expensive, but officials say the minimum tax penalty for remaining uninsured is $695, and could rise to more than $10,000 for wealthy families who choose not to get coverage. Photo Alto/Getty Images hide caption

toggle caption Photo Alto/Getty Images

Federal health officials have this message for people who want health insurance: Don’t wait.

There are just four days left to sign up for an insurance plan under the Affordable Care Act, and officials from the Department of Health and Human Services are stressing that they won’t extend the enrollment period this year beyond Jan. 31.

“If people plan to get covered and they want coverage this year, now’s the time to do it,” says Andy Slavitt, acting administrator of HHS’s Center for Medicare and Medicaid Services, which oversees HealthCare.gov, the federal health insurance exchange.

Slavitt warned that people who are eligible and don’t buy insurance face big tax penalties. The minimum fine for remaining uninsured is $695, and could rise to more than $10,000 for wealthy families who choose not to get coverage.

Slavitt could have been aiming his warnings at people who responded to a Kaiser Family Foundation poll released Jan. 28. The poll found that many people who don’t have insurance are planning to buy a policy “in the next few months.”

That’s not an option for most people if they want insurance before January of next year. Officials say that after Sunday, consumers will only be allowed to buy insurance through the federal and state exchanges if they experience certain life-changing events, such as getting married or losing a job.

The CMS says about 8.9 million people have signed up so far this year for new coverage under Obamacare, or have re-enrolled in their old health plan. That brings the total number of people covered under ACA plans to 11.6 million.

The agency expects a rush of sign-ups as the deadline approaches.

Kevin Counihan, CEO of Healthcare.gov, says 11 people are signing up every second, and the website has 50 percent more traffic than it did a week ago.

Still, the Kaiser Family Foundation estimates that about 30 million people remain uninsured; many of them will be much harder to reach than those who bought insurance during the first two years after the Affordable Care Act went into effect.

The Kaiser poll shows only 15 percent of the uninsured know the deadline is Jan. 31. And while many know they face a fine if they don’t buy insurance, almost none of those surveyed are aware of the size of that penalty.

Kaiser surveyed by telephone between Jan. 13 and Jan. 19 about 1,200 adults living in the U.S. The poll has a margin of error of plus or minus 3 percentage points.

More than half of those polled by Kaiser say they have never been contacted about signing up for coverage, nor have they tried to determine if they are eligible for Medicaid or subsidies to offset the cost of insurance.

Counihan says HealthCare.gov boosted its advertising in recent weeks with special television-ad purchases in eight cities that have high rates of uninsured people. He also says the agency is trying new forms of outreach, such as a partnership with the ride-hailing service Lyft to remind its drivers to shop for a health plan.

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California Pays Insurers Millions More For Hepatitis C Drugs

Gilead Sciences' new drug Sovaldi effectively cures hepatitis C, but the price is straining state budgets.

Gilead Sciences’ new drug Sovaldi effectively cures hepatitis C, but the price is straining state budgets. Eric Risberg/AP hide caption

toggle caption Eric Risberg/AP

Private health plans invoiced the state of California $387.5 million to cover high-cost hepatitis C treatments in Medi-Cal between July 2014 and November 2015, when just 3,624 patients received the treatments, according to the California Department of Health Care Services.

The state’s supplemental payments started after managed care plans that cover health services for almost 80 percent of Medi-Cal recipients raised “alarm” about the high cost of the new drugs. The hepatitis C treatments were eating into financial reserves, said Charles Bacchi, president of the California Association of Health Plans, an industry trade group.

“Dollars that were intended for a wide array of medical services started being gobbled up by just one drug,” Bacchi said.

The health insurance companies are usually paid a flat rate per member to cover all health care needs. The Department of Health Care Services says this is the first time the state has paid health plans extra money to cover high-cost drugs. Sovaldi, a hepatitis C drug retailing at $1,000 per pill, has sent treatment prices soaring. The drug is made by Gilead Sciences of Foster City, Calif.

A mix of federal and state dollars paid health plans an average of nearly $107,000 per patient over 16 months. The funding will continue next year: The state health care agency has budgeted $303.4 million in supplemental drug payments for health plans for 2016–17.

Although the members of Bacchi’s trade group benefit from the additional funding stream, he says the state’s supplemental payments aren’t a “sustainable” solution.

The state receives some money back from drugmakers in the form of rebates. The ultimate price paid for drugs is confidential, according to the state health agency.

A ballot initiative aimed at limiting the cost of pharmaceuticals is expected to go before voters this November. The measure would limit the amount the state pays for a drug to no more than the lowest price paid for the same drug by the Department of Veterans Affairs.

The state health care agency says its payments to insurers of Medi-Cal patients for hepatitis C drugs are a “very unique” solution, one that they may use for other high-cost drugs in the future. The state says the current hepatitis C payments may be reassessed in a year or two as the price of the drugs go down.

“As the prescribing of the drugs levels off, as the population and the overall nature of who’s getting it settles down, we may get to a point where we look at carving that responsibility back into the plans’ … rate,” said Jennifer Kent, director of the California Department of Health Care Services.

But California’s spending on hepatitis C drugs doesn’t end there.

Another 2.7 million people on Medi-Cal have care directly reimbursed by the state. California paid almost $22 million to treat 280 hepatitis C patients in that population with Sovaldi in 2014, and more than $2.8 million for 57 prescriptions for a second new drug, Harvoni, according to a report from the U.S. Senate Finance Committee.

About 237,000 people in Medi-Cal are infected with hepatitis C. That means less than 2 percent of that population has received the new hepatitis C treatments in Medi-Cal as a whole, with the sum of money and during the two different time periods we reference above.

“In order for taxpayers of the state of California to afford to provide people the necessary treatments,” says Bacchi, “we have to have drug pricing society can afford to pay.”

If you are a hepatitis C patient or other chronic disease patient who is having difficulty getting drugs, please comment on our Medium post, tweet us or reach out through CALmatters.org.

Pauline Bartolone is a reporter for CALmatters, a nonprofit journalism venture dedicated to explaining state policies and politics.

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Would You Tell The World You Have Schizophrenia On YouTube?

Rachel Star Withers says that video blogging about schizophrenia and depression has helped her manage the disorders.

Rachel Star Withers says that video blogging about schizophrenia and depression has helped her manage the disorders. Courtesy of Rachel Star hide caption

toggle caption Courtesy of Rachel Star

When she was 22, Rachel Star Withers uploaded a video to YouTube called “Normal: Living With Schizophrenia.” It starts with her striding across her family’s property in Fort Mill, S.C. She looks across the rolling grounds, unsmiling. Her eyes are narrow and grim.

She sits down in front of a deserted white cottage and starts sharing. “I see monsters. I see myself chopped up and bloody a lot. Sometimes I’ll be walking, and the whole room will just tilt. Like this,” she grasps the camera and jerks the frame crooked. She surfaces a fleeting grin. “Try and imagine walking.”

She becomes serious again. “I’m making this because I don’t want you to feel alone whether you’re struggling with any kind of mental illness or just struggling.”

At the time, 2008, there were very few people who had done anything like this online. “As I got diagnosed [with schizophrenia], I started researching everything. The only stuff I could find was like every horror movie,” she says. “I felt so alone for years.”

She decided that schizophrenia was really not that scary. “I want people to find me and see a real person.” Over the past eight years, she has made 53 videos documenting her journey with schizophrenia and depression and her therapy. And she is not the only one. There are hundreds of videos online of people publicly sharing their experiences with mental illness.

In her early videos, Withers glowers. She tried to give off an aura of toughness befitting the daughter of a Hell’s Angel biker. But there’s also a sense that terror is a deep undercurrent in her life. “All right, let’s go,” she says in the video “Watch If You Forget,” where she documents getting electroconvulsive therapy for depression. Then, in the next few seconds, “I’m about to start the electroshock therapy and, yeah, I’m pretty nervous.”

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Things have changed a lot since then. Now, almost all her videos open with Withers flicking her black curls, arms raised with swagger: “Hey, what’s up! I’m Rachel Star!”

That public sharing of mental illness might be making a huge impact on the way our society views these disorders, especially for those of us who are digital natives. Millennials tend to be more comfortable talking about mental health issues, according to a poll released Jan. 14 by the Anxiety and Depression Association of America, along with two national suicide prevention foundations.

When it came to seeing a mental health professional, for instance, 48 percent of survey respondents between the ages of 18 and 34 said that it was a sign of strength. About 35 percent of all prior generations felt the same way.

“Our young people are accepting that mental health problems exist, and they want help for it, and they are not looking at these things as something to be ashamed of,” says Anne Marie Albano, a clinical psychologist at Columbia University who is on the board for the ADAA.

She thinks that social media and videos like Withers’ have helped lower stigma around mental illnesses. “Young people take advantage of this,” Albano says. “It gives the opportunity for people to tell their stories and post images. This allows them to feel more hope than prior generations.”

There might be other reasons young people are less concerned about stigma surrounding mental illness. Perhaps as you age, your outlook becomes more pessimistic, says John Naslund, a Ph.D. candidate at the Dartmouth Institute for Health Policy and Clinical Practice who studies social media and mental health. He notes that the ADAA poll found that a higher percentage of older adults than young people didn’t believe that something like suicide could be prevented. “Maybe they’ve been through this before and have had people close to them take their own lives.”

He hopes things really are getting better. “It’s very possible. That would be a very exciting change in the way society views mental illness,” Naslund says. But the problem has not been solved. Even if information moves quickly, change is slow. “It’s really important to acknowledge that people who have serious mental disorder still face a lot of stigma,” he says.

When she was younger, Withers struggled with a lot of shame and humiliation over her disorders. “For so many years, I felt like a freak,” she says. Part of that was the religious community she had joined. “Think militant Christian. Like a militaristic type,” she says. When she was 17, she graduated from high school early to attend the former Teen Mania Ministries Honor Academy in Dallas. “I honestly thought that’s what God wanted me to do.”

At the same time, her mental condition was deteriorating. She says her schizophrenia was starting to emerge and transform into something unmanageable. The counselor at Honor Academy diagnosed her with depression and prescribed pills. They didn’t help. Eventually she told them about her hallucinations. “This being a Christian place, they decided I was possessed by demons.”

For three days, Withers fasted. Each morning, she met three of the school’s spiritual advisers, and they spent the day performing an exorcism in a closed room. They read Bible verses, and Withers confessed to everything she could think of that might be construed as a sin — even watching demon-related TV shows like Buffy The Vampire Slayer.

At the end of the crucible, Withers was on the floor, exhausted. “I was young and here are these people who you know, I’m told, are close to God. I was like … OK. It must be right,” she says. “Surprise! It didn’t work. I spent six more months there as an outcast.”

Reducing this kind of stigma is a fundamental reason Withers continues making videos. She wants others to see those struggling with mental disorders with more compassion, and she wants people with a mental diagnosis to see themselves more positively.

Comment on a video uploaded by Rachel Star Withers

YouTube

After she posted her first video, Withers says, “People just come out of the woodwork emailing me, messaging me. The friends I’ve had the longest time, even people I’ve never met in real life with schizophrenia and like disorders. We just started talking.” She got invited to mental health forums and to mental health support groups on Facebook.

“Thank you for these videos. They really help me to better understand my sister,” YouTube user Kathryn Hatzenbuhler posted under one video.

These online communities are an important part of Withers’ life now. “Whenever I’m posting on Twitter, I’ll put #schizophrenia and #schizophrenic. I’m hoping to find other people who are having problems,” she says.

Withers ended up making a coloring book for kids with schizophrenia, and she shares ways she has figured out to deal with her visions and voices.

Via webcam, she showed me two askew mirrors in her room that can be angled away from the viewer. “People with mental disorders don’t do well with mirrors. I just start hallucinating,” she says. “It’s real hard putting on makeup, you have to imagine. Having the mirrors at an angle helps.”

In one video, she talks about walking up to one of her hallucinations to touch it, and that alone took away some of the fear. “It’s kind of something to help you get used to your hallucinations, so you know how to respond, because the voices are always horrible. The voices are never like, ‘Oh my God, you look so good today.’ “

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YouTube

There’s no hiding her disorder from anybody on Facebook, so people she knew in real life started finding out. It caused her pain at some jobs (“This one girl was like, ‘Oh she’s crazy. I’m not working with her’ “), but it also led some people to talk about their own or their family’s experiences with mental disorder. “They’ll be like, ‘So … I saw your post, Rachel. I had a question.’ “

Researchers think there’s a potential gold mine of mental health benefits in exchanging messages and encouragement online like this. “Social support is always the No. 1 variable that predicts a better prognosis and better care management of anyone’s illness,” Albano says.

It’s a small leap from there to think that participating in mental health-focused communities on YouTube and Facebook might actually be making people healthier and preventing suicides. “That’s probably absolutely correct,” says Patrick Corrigan, a professor of psychology at the Illinois Institute of Technology. But scientists are only just now beginning to measure the effect social media might have on clinical outcomes. “It’s quite a new area of thinking, online peer-to-peer support for mental illness,” Naslund says.

But there’s an obvious downside to being public on social media about mental health problems. “Say I have a network of friends and I have a breakdown one day. It will spread through social media, maybe in negative ways,” says Michael Lindsey, a professor of social work at New York University. That could be through someone’s real social groups, like at work or school, or it could be anonymous, via Internet trolls. For those already depressed, anxious or paranoid, cruel comments and messages could have a terrible impact.

But in Naslund’s research, he says that problems with online attacks have been extraordinarily rare. “If someone did post a derogatory comment, seemed a little harmful, other people would come to the defense and say, ‘Don’t listen to that,’ ” he says. “[Social media are] way more supportive than we imagined.”

According to Naslund, the benefits seem to vastly outweigh the harms. “That’s clear in the literature,” he says.

And Withers agrees. She doesn’t think that people with mental health problems usually go on social media and spiral out of control even more. “I’m sure it happens somewhere on some area of the Internet,” she says. “But I think usually when I’m feeling depressed and stuff, but then I see someone else thinking of hurting themselves, the opposite kicks in. It’s like, no. You have so much to live for. You’re able to pull yourself out in a way to help someone else.”

When Withers does get trolls, she blocks them. “Anything remotely violent towards me gets blocked,” she says. “Like — I’m not going to respond to that. Don’t call me that word.”

Still, she cautions others to think carefully before coming out to the world about their mental illness. It can be dangerous, she admits. She says she gets phone stalkers and death threats. But she is still glad that she did it. It’s uncomfortable for her to think what might have happened if she never went online about her depression and schizophrenia. “I see myself being a lot more closed off,” she says. “I hope I would have found other people’s videos.”

Withers attributes a lot of her transformation to electroconvulsive therapy. She says it knocked out a lot of her deep depression. And Withers thinks sharing on the Internet has also helped. “It helps me to vocalize it and put it all out there,” she says, and it makes her feel like she is less “broken and sick” when other users empathize with her online.

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Rachel Star YouTube

Recently, she posted a video to YouTube called “There Will Be Beautiful Days.” It’s short, reaching just past a minute long. Withers smiles and says she knows things are hard now. Maybe harder than they’ve ever been. But it’s going to be OK. And at some point, you’ll have some good days. Maybe even just one great day, but it’ll be enough. It will make life worth fighting for.

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Teaching Parenting Skills At Doctor Visits Helps Children's Behavior

A mother watches a video taken of herself playing with her daughter while at Bellevue Hospital in New York for a checkup. Brenda Woodford provides coaching on parenting skills.

A mother watches a video taken of herself playing with her daughter while at Bellevue Hospital in New York for a checkup. Brenda Woodford provides coaching on parenting skills. Courtesy of Children of Bellevue Archives hide caption

toggle caption Courtesy of Children of Bellevue Archives

As researchers have come to understand how poverty and its stresses influence children’s brain development, they’ve begun untangling how that can lead to increased behavior problems and learning difficulties for disadvantaged kids.

Rather than trying treat those problems, NYU child development specialists Adriana Weisleder and Alan Mendelsohn want to head them off.

They say they’ve found a way: Working with low-income parents when they bring babies and young children to the pediatrician. They’ve been able to reduce key obstacles to learning like hyperactivity and difficulty paying attention, according to research published Wednesday in the journal Pediatrics.

The researchers recruited mothers with newborns to participate in the study and divided them into three groups. One group received standard pediatric care, which includes some basic coaching on reading to kids. The second went home with books, toys and informational pamphlets, and the third worked with a trained child development professional for about 30 minutes before or after each checkup. The specialist filmed each mother and child reading or playing together for a few minutes, talked to the mother about the positive things she did with her child and sent her home with the video.

At 3 years old, 50 percent fewer children in the video interaction group who were most at risk showed signs of hyperactivity compared to those who got standard pediatric care. The results were positive, though less remarkable, for the video group as a whole.

Improving a child’s ability to focus, regulate behavior and cooperate with other kids can help a child learn. “If a child is controlling their behavior, not overreacting and paying attention, they will be taking in more information from learning activities,” says early childhood expert Susan Landry, director of the Children’s Learning Institute, who wasn’t involved in the study. “All those things help in the classroom to be a better student.”

The results show that a relatively cheap form of intervention works, the researchers say, and could be used reach a big swath of the population, including families who are often hard to reach because parents work multiple jobs or phones get disconnected.

By using pediatric checkups as a way to engage parents, the researchers say they could reach every child without burdening parents with additional transportation or logistical demands. “We’re leveraging the relationship they already have with the pediatric clinic,” Weisleder says.

While home visits to provide this sort of one-on-one behavioral training can cost between $1,500 and $10,000 per child per year (models vary widely), the video program costs around $200. David Willis, director of the federal Health Resources and Services Administration’s Early Childhood Home Visiting Program, notes that the home visit program is far more intensive than the NYU video method, with families getting between 25 and 30 visits per year. Each lasts at least an hour.

“The families we serve are some of the most challenged families in country,” Willis says. Home visits are an important resource for them, but he estimates the program only reaches 1 to 3 percent of families who could benefit from it. “To simultaneously have this [video interaction] program that’s likewise focused on promoting positive parenting and brain development in the youngest families is really significant,” he says.

Landry thinks the video intervention could be embedded into almost any type of pediatric setting for very little cost. “That’s something all of us have been searching for, “she says. Her team at the University of Texas Health Science Center at Houston is working to make home visits by child development specialists more affordable by giving parents iPads so they can work remotely with experts.

The findings don’t just apply to disadvantaged families. As a pediatrician, the first advice Mendelsohn gives families when kids have behavior problems is not to think about discipline, rather about positive steps.

“Can you start to pay attention to your child when your child is being good?” he asks. Negative interactions can turn into a cascade, he says, in which parents feel worse about themselves, which influences kids negatively, which ultimately makes things even harder for parents. “Kids misbehave because it’s their job,” he says. “It’s our job to be able to help them learn and regulate their behavior.”

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Do-It-Yourselfers Face Penalties Over Their Cut-Rate Health Insurance

Piecing together inexpensive insurance plans could come with a hidden cost.

Piecing together inexpensive insurance plans could come with a hidden cost. Leigh Wells/Ikon Images/Corbis hide caption

toggle caption Leigh Wells/Ikon Images/Corbis

Last fall, Shalonda Brown decided she’d had it with paying nearly $1,000 a month for family health, dental and vision plans through her job at an independent lab in Dallas.

Casting about for an alternative, she checked out individual family plans on HealthCare.gov. No dice. The family’s income was too high to qualify for subsidies and comparable coverage wouldn’t be any cheaper.

So Brown instead cobbled together three different policies that each provide limited coverage for her, her husband and 2-year-old daughter: a short-term plan with a $10,000 deductible that provides up to $1 million in coverage for just under a year; a critical illness plan that pays a $20,000 lump sum if one of them is diagnosed with invasive cancer, heart attack or stroke; and a dental plan that provides $1,000 in coverage. The total monthly tab: $390.

“I feel like it’s just giving me everything I need as of right now,” said Brown, 31. “Me and my family, knock on wood, there’s nothing urgent or major to deal with now.”

But there’s a catch. Under the health law, most people are required to have insurance that meets minimum standards or pay a fine. Limited benefit policies such as short-term, critical illness, accident, dental and vision plans don’t qualify.

In 2016, the penalty is $695 per adult and $347.50 per child, or 2.5 percent of household income, whichever is greater.

Brown knows she’ll face a penalty if her family doesn’t have comprehensive coverage this year, but she’s willing to pay the fine. “When I look at what I’m saving having a short- term plan versus regular insurance, it’ll balance out,” she said.

Faced with sky-high premiums and high deductibles for traditional plans, it’s not surprising that some people are looking at other options.

“They may be making the best decision they can for themselves given their financial and health situation,” said Sabrina Corlette, research professor at Georgetown University’s Center on Health Insurance Reforms. “But it’s a roll of the dice, and if something bad happens, they could find themselves on the hook for a very big bill.”

Under the health law, regular health plans are prohibited from imposing lifetime or annual limits on coverage, or from turning people down because they’re sick. Short-term policies — which generally impose dollar limits on coverage, don’t cover treatment for preexisting conditions and may refuse to renew a policy if someone gets sick — don’t meet those standards.

But many people are taking an interest in the plans nevertheless. In 2014, when the provisions of the health law took effect, the number of people applying for short-term plans rose 130 percent, to 147,383, at online health insurance vendor eHealth.

Sales of critical illness and accident policies, which generally pay a lump sum if someone has a qualifying event such as a car accident or cancer diagnosis, are also on the rise. Sales of critical illness policies on the individual market grew to $311 million in 2014, a 24 percent increase over five years, according to financial services research company LIMRA. Nongroup accident policy sales reached $430 million in 2014, a 13 percent rise over five years.

As consumer interest in limited benefit plans has grown, some carriers are bundling critical illness and accident insurance policies together, or offering a single plan that provides coverage for both, says Nate Purpura, vice president of consumer affairs at eHealth.

The typical purchaser of accident or critical illness coverage at eHealth is a self-employed person who already has a comprehensive insurance plan and wants some extra financial protection, says Purpura. It’s less common for people to cobble together different limited plans to rely on as a replacement for regular insurance.

“Short-term insurance is designed for a short-term gap, and accident and critical illness plans are not designed to replace major medical,” Purpura said.

With an average lump sum payout of $31,000 for an individual market critical illness plan, according to insurer Gen Re, the policies won’t come close to covering treatment for a serious illness.

“We just want to be sure that people understand what they’re buying and understand the limitations of these plans,” says Anna Howard, a policy principal at the American Cancer Society Cancer Action Network.

For her part, Shalonda Brown hopes to get regular insurance again soon. Her husband has applied for a government job with comprehensive health insurance that, she hopes, would be more affordable than her employer plan.

Kaiser Health News is an editorially independent news service that is part of the nonpartisan Henry J. Kaiser Family Foundation. Michelle Andrews is on Twitter:@mandrews110.

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Anti-Abortion Activists Indicted On Felony Charges In Planned Parenthood Case

A grand jury in Houston has returned indictments against two members of a group that targeted Planned Parenthood with a string of undercover videos last year. The felony indictments are a twist as the panel was originally tasked with investigation the group’s claim that Planned Parenthood was selling fetal tissue.

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Journal Editors To Researchers: Show Everyone Your Clinical Data

Journal editors want researchers to unlock the data vault.

Jamie Jones/Getty Images/Ikon Images

Medical editors don’t usually attract much attention. They perform their daily duties evaluating submissions and producing articles that, on good days, influence practice and policy.

But last Wednesday, the editors of the leading medical journals around the world made a proposal that could change medical science forever. They said that researchers would have to publicly share the data gathered in their clinical studies as a condition of publishing the results in the journals. This idea is now out for public comment.

As it stands now, medical scientists can publish their findings without ever making available the data upon which their conclusions were based.

Only some of the top journals, such as The BMJ, have tried to make data sharing a condition of publication. But authors who didn’t want to comply could just go elsewhere.

Think about it. The scientists who generate the data, with the participation of the people being studied and often with public funding, control it and most often don’t share. By holding the data tight, researchers who ran a study are the only ones who can conduct additional analysis and studies.

If the proposed change is adopted, as I hope it will be, it would make sharing more compelling.

Inaccessible data is a problem rife throughout medical science. Industry traditionally held its data close — but so did academics.

These researchers have felt that they deserved the right to future papers for all their hard work gathering the original data. And maybe they didn’t want others examining their work.

But this practice shields data from scrutiny. It forgoes an opportunity to crowdsource knowledge from scientists who weren’t associated with the original study. It also violates the sensible practice of showing your work, not just the presumed answer.

Some skeptics contend that those who pore over data generated elsewhere are nothing more than “research parasites.” But that disparaging term neglects the key role that independent scientists can play in bringing new insights and also in validating the quality of the data that were collected. Access is also central to the scientific method and the idea of replication to establish the truth.

The editors who made the proposal sought to be sensitive to the rights of researchers, funders and participants. But their intent is clear: It’s time to share.

The past culture has impeded science. For example, many times in my career as a heart disease researcher, I respectfully requested access to clinical trial data held by others. The response was no — regardless of the merit of the request — and most often from other academics. It is a behavior that would be hard to imagine in other fields like physics or astronomy.

The data from clinical trials have the potential to provide additional knowledge that often goes untapped.

There were times my research group was able to gain access to data through the National Heart, Lung and Blood Institute, which promotes sharing of trials it funds, or through litigation. We uncovered insights that weren’t in the original articles. Our work produced papers that found their way into the New England Journal of Medicine and JAMA, the journal of the American Medical Association. The findings have since been cited by thousands of other papers, incorporated in treatment guidelines for doctors and patients. In several cases our results upended the original conclusions.

Others have also used trial data to replicate and extend findings from the initial studies and made critically important contributions.

In recent years the momentum for open science has grown rapidly. This action by the editors follows directly from guidance in 2015 from the National Academy of Medicine (formerly the Institute of Medicine), a body of the nation’s top medical experts, that said clearly it is time for the culture of medical research to change.

Companies such as GlaxoSmithKline, Johnson & Johnson and Medtronic have led the way in sharing their trial data. Our group at the Yale Center for Outcomes Research and Evaluation started the Yale Open Data Access Project to promote data sharing and was an early advocates for open science. We are showing the feasibility of establishing partnerships with industry and acting as a trusted intermediary. Visit the site, and you can see a variety of trials from Johnson & Johnson that are available to scientists around the world.

With sharing, the sky hasn’t fallen and worthwhile independent projects that couldnot have been done otherwise are proceeding. Many academics and companies are lagging, however. As a result, the data from a large number of trials remain off-limits.

Amid the progress, there has been a lack of consequences for not sharing. Even as the benefits from sharing are manifold, to be honest, it’s easier not to share. Why expose your data to others? Why compromise your ability to publish more at your own pace? Why risk the possibility that someone could find an error? Why let others benefit from your hard work? Why spend the money to do it?

The absence of an incentive to share seems about to change. The proposal by the medical editors outlines an approach that would require a data-sharing policy when the study is started; a commitment to share within six months of publication; and a requirement that those who use the data acknowledge those who produced it. The data should be down to the level of the individual patient (identifying information will be removed) rather than just summary data, an important detail that will allow rigorous science to proceed.

Among the first things we learn in school are to share and to show our work. This lesson has been lost on medicine for many years. The medical editors are reminding us that we scientists have a principal responsibility to society and to those who agreed to participate in our studies.

There are many details to resolve. How will sharing work? Who will pay for it? How will the researchers who produced the work get credit in the subsequent analyses? All good and difficult questions, but it is high time to find solutions.

For now, this proposal is out for public comment. It is likely that mostly scientists will weigh in on how the change would affect their work. It would be great, in my view, if the general public participated too. Do people want to see scientific data exposed to the light, available to advance knowledge for generations? The public stands to benefit the most. I hope that voices other than those of my colleagues will be heard.

Harlan Krumholz is a cardiologist and the Harold H. Hines Jr. Professor of Medicine at Yale School of Medicine. He directs the Yale-New Haven Hospital Center for Outcomes Research and Evaluation and is a co-director of the Robert Wood Johnson Foundation Clinical Scholars Program. To comment on the proposal described above, you can go to www.icmje.org.

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