YOUR DOCTOR VISIT? IT'S GOING ELECTRONIC

I thought many of you in the community would find this interesting.  Many of us who have Moebius, and many of you Moebius moms and dads, do have to make more doctor visits than do some folks.  Having Moebius can mean that more physical problems crop up; and so that can mean more trips to the doctor.  But now, you might message your doctor a question electronically, with he or she answering you the same way, rather than seeing the doc face to face; or, your visit with the doctor might be via video; or, you might go online to find medical information, rather than visiting a doctor's office.

Is this a good thing?  Certainly sometimes it can be, when you need information quickly.  Is it always a good thing?  Maybe not; sometimes I suspect those of us in the Moebius community need to see our physicians face to face, and they need to see us that way too, to really get to know us and understand our condition.  But things are changing.  Read on:

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Thanks to technology, Gary Sullivan enjoys a new kind of relationship with his doctor. If he wakes up with a routine health question, the 73-year-old retired engineer simply taps out a secure message into his doctor’s electronic health records system. His Kaiser Permanente physician will answer later that day, sparing Sullivan a visit to the clinic near his Littleton, Colo., home and giving his doctor time to see those with more urgent needs.

Once you took medical questions directly to your doctor, who advised, tested and treated you. Today, not only are we turning to the Internet for everyday medical information, we’re also generating our own health data: using a smartphone, for example, to investigate a child’s ear pain or monitor blood pressure. We’re learning from our peers online how to cope and find new treatments. Our doctors can keep our records electronically, accessible to us through a patient portal. Some of us can make video visits with doctors, who can offer diagnoses and treatment plans via computer or smartphone.
With all these advances, a traditional paternalism in medicine is changing, too.
“There’s no question that technology is shifting the doctor-patient relationship,” said pediatrician Wendy Sue Swanson, executive director of digital health at Seattle Children’s Hospital.

Susannah Fox, entrepreneur in residence at the Robert Wood Johnson Foundation, describes a “sea change in communications” over the past 15 years.
“Consumers only used to get a filtered drip of information,” she said. “What the Internet did was pull open that funnel and give people more access — not complete access — to health information.”
Almost three-quarters of American adults use the Internet to search online for health information each year, according to the Pew Research Center. While patients are digging through new information, so are doctors. A “tsunami of knowledge” from hundreds of journals pours over doctors, says Jack Cochran, executive director of the Permanente Federation.
All this information changes the culture. “Doctors say they’re taught to know things that others don’t,” said Dave deBronkart, a cancer survivor and advocate for patient engagement. Today, thanks to online searches and communities, a patient may know about advances before a doctor does.
Where this reliance on the Internet will lead remains unclear, and the technology has not been perfected. More than a third of consumers experienced gaps in their electronic health information, such as test results or history that were not available at a medical visit, according to a 2014 government brief. The health-care system is still far from fully connected by computer, and doctors can be swamped by data.
“We are unfortunately at a very awkward stage where we have a lot of technology at our fingertips, and health care has not quite figured out how to use it,” Fox said.

Plugged-in doctors

There’s probably a computer or tablet in the exam room at your doctor’s office. In 2001, 18 percent of doctors used electronic health records systems. Today, about two-thirds of doctors and most hospitals use them. This change was propelled, in large part, by a program from the stimulus act of 2009 that has invested $29.6 billion as of February 2015 to help Medicare and Medicaid providers convert to and use digital records.“It is your data; you control it. You have the right to see it in an electronic form,” said Karen DeSalvo, national coordinator for health information technology in the Department of Health and Human Services.
“People need to ask for it. Some people feel that they don’t want to bother the doctor or bother the hospital. . . . And sometimes the systems make it hard to get.”
The availability of electronic health records and consumer resources “changes the power relationship” between doctors and patients, DeSalvo said. “It’s a leveler in many ways.”
Half of patients now have online access to their health information, according to a recent online poll commissioned by the National Partnership for Women & Families. And a majority want, like Gary Sullivan, to be able to message their doctors.
Not only should you read your electronic health record, you should check for errors. “Most people’s records contain mistakes,” deBronkart said. His 2009 blog about mistakes in his Google Health record led to a front-page story in the Boston Globe and a career as an advocate known as e-Patient Dave. (Google Health, a free service intended to help consumers pull together medical and wellness information, was discontinued in 2013 because it failed to generate broad interest.)

The eye-contact issue

Doctors sometimes spend more time looking at the computer than at the patient during an appointment, which makes personal medicine much less personal, said Enid Montague, an assistant professor of engineering and medicine at Northwestern University. Strategies such as turning the screen toward the patient and discussing what’s being typed improve the interaction.

Computers can frustrate doctors. DeSalvo notes that some electronic health systems are still clunky — designed for billing, not caregiving. Doctors can feel burdened by documentation and making the best use of computers.

The possibilities of digital records are apparent with OpenNotes systems, in which patients can see not just lab results and tests but also the full notes their doctor made from a visit.

OpenNotes began in 2010 as a research project involving 105 doctors and 19,000 patients at three sites. Physicians initially worried that the open information would lead to confusion for the patients and more work for the doctors, but a study found that about three of four patients in the project reported feeling more in control of their care. They understood their conditions better and felt more likely to take medicines as prescribed. Now, nearly 5 million patients across the country have access to OpenNotes.
Much of the information collected in your annual exam can be generated by your smartphone, says cardiologist Eric Topol in his book “The Patient Will See You Now: The Future of Medicine Is in Your Hands.” His patients are proof: Many carry a small sensor they can put on their fingers that will transmit to their smartphones and produce cardiograms in an app.
“The willingness to accept technology is going to have an ever-increasing role, and we’re not going to lose the patient bond but we’re going to remodel it and make it better,” said Topol, director of the Scripps Translational Science Institute in La Jolla, Calif.

Smartphone as health hub

In his book, Topol catalogues a wide array of functions that a smartphone-as-hub can handle now or in the near future. Biosensors capture data including blood pressure, heart rhythm, respiration rate, glucose rate, brain waves and more. The selfie of the future will be medical imaging, including high-resolution ultrasounds or X-rays. The smartphone’s microphone can capture data about lung function or mood. Smartphones might also be able to track nanochips that would be embedded in the bloodstream to monitor tumor DNA or genomic signals of heart attack or stroke.
Seven of 10 of us track at least one health indicator such as weight or blood pressure, according to Pew Research. Thanks to self-monitoring technology, Gary Sullivan, the retired engineer, was able to identify a problem with his diabetes treatment. He had been part of a Kaiser Permanente pilot program that allowed him to connect his glucose monitor to his computer to generate data for his care management team and for himself. After he’d lost weight from a fall, Sullivan realized his readings seemed off. He contacted his care managers and quickly got his insulin readjusted.
“Having the technology side of it, loading it on the computer and seeing it on a graph is real positive reinforcement that we need to make a change,” Sullivan said.
Not every patient is interested in taking digital charge of his or her health. There are three kinds of patients, says Montague: those who view the health-care system as a manufacturing plant in which they’re just cogs going through; those who seek information and want to share in the planning; and those who want to drive the decisions themselves.
“It’s . . . not a silver bullet,” said the Permanente Federation’s Cochran. “Giving a patient a smartphone doesn’t automatically make them motivated. It’s not like a vaccine. It’s about how do they use it, what do they learn, what do they learn over time.”

A less formal relationship

With her patients seeking health information from so many sources, Seattle Children’s Hospital’s Swanson recognizes that her role has changed: “The role that the physician plays has to transform from teach and preach to really thinking about how do I curate health information for the family that is with me for less than 1 percent of their life,” she said
Sullivan likes his new relationship with doctors. “I don’t have this feeling like doctors are way elevated, and you just don’t ask them anything. . . . Now it’s more of a conversation mode with doctors,” he said. “It’s just a less formal relationship with the medical folks, and I think that leads to a much better situation.”

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