While only a healthcare provider is actively encouraged to interface with an electronic health record (EHR), patients of all kinds—and rheumatology patients in particular—are increasingly getting the chance to participate in their care using all things electronic: pads, portals, kiosks, and phones to make an appointment, renew a prescription, participate in research, or see a doctor remotely. The technological blue sky, it seems, is no longer the limit.
Telemedicine
One key aspect of this brave new medical world is, of course, telemedicine. In the vanguard of the push towards widely available telemedicine is the state of Georgia, where the Georgia Telemedicine Network (GTN) was launched in 2004.
“The goal was to link rural patients with tertiary healthcare providers,” explains William McClatchey, MD, a rheumatologist at Piedmont Physicians Group in Atlanta. The problems of rural isolation and a lack of specialty care are of particular concern in this state.
Since its launch, GTN has spread its coverage to many parts of the state. “At the present time, if you are in a remote area and you have RA [rheumatoid arthritis] and your doctor is 20 miles away in the county seat, that doctor can get you into a room in your own community, many miles away from me in Atlanta, and we can all have a face-to-face electronic interchange about patient care,” says Dr. McClatchey. This virtual consultation brings the specialist to the patient.
Patients, understandably, are thrilled, and Dr. McClatchey is, too, for the most part, although there are trade-offs. “I do miss the hands-on,” he says. “There’s nothing quite the same in the surrogate experience, even though there has been a lot of technology applied to the notion of telecommunication—the electronic stethoscope and such—but in terms of feeling a swollen joint … I don’t know anybody that has figured that one out.” Yet on the upside, labs and imaging studies can be ordered and a course of treatment determined, all without the patient leaving their rural community.
Patient participation in electronic medicine can seem to be fairly passive (i.e., try to sit still for the web cam). That perception underestimates the potential role of patients, which can be very active, as described by Dr. McClatchey. In addition to being a rheumatologist, he has served for the last 15 years as the chief medical information officer for a healthcare organization of six hospitals and 450 associated physicians. In this capacity, he has implemented an organization-wide EHR system for providers, and enabled patients to access much of the information through a secure web-based portal. McClatchey sees this innovation not so much as proficient e-medicine, but as good customer service. “Our current proprietary system allows our patients to schedule appointments, get the results of studies—labs and imaging—renew scripts, and have a narrative with their providers,” he notes, all with assured privacy behind a secure firewall.
Regarding the convenience, the system cuts both ways. “As a rheumatologist, I need to be focused on the complex problems, defining a treatment plan, and dealing with complex complications,” says Dr. McClatchey. “If I’m in the room telling somebody that their blood count is normal, that’s a waste of everyone’s time.”
Patient Kiosk
Dr. McClatchey’s next push is the organization-wide installation of patient kiosks—again, as a facet of customer service. “Think about it,” he says, “one of the things that just grates on every patient’s nerves—me included—is the clipboards. How stupid is it that we have to do this every time we go to a new doctor? The kiosk can bypass that.” Ideally, the patient will arrive in the office, sign in on the electronic clipboard, enter the pertinent information, and then save that entry, never to be typed again in any of the offices of Dr. McClatchey’s organization. Though systems integration remains a challenge to realizing this goal, the solutions are in sight, and Dr. McClatchey is highly motivated through frustration. “It’s just nuts that we have all these isolated islands of medical information,” he says. The customer should be better served.
The VA Way
Customer service is also on the mind of Salahuddin Kazi, MD, associate professor of internal medicine and chief of rheumatology, and chief health informatics officer for the VA North TX healthcare system in Dallas. In August 2010, the VA rolled out the Blue Button initiative, allowing veterans to access their “MyHealtheVet” web-based electronic medical records off site. “With just a computer and an Internet connection, this allows you to remotely download important data about the care you are receiving at the VA,” says Dr. Kazi, “so if you need to go to a private [non-VA] physician, or go to an outside emergency room, you have the information you need to ensure that you get safe and effective care.” The available information is all text as yet (no radiographs, for example) but the results of all testing and imaging are available at a mouse click. The records also combine data from active duty care with current VA histories.
Since the rollout, adoption has been swift. “We have about 5 million vets and at least a third of that number is now registered users of the MyHealtheVet e-portal. We’ve already processed over 20 prescriptions this way,” Dr. Kazi says. His involvement entails designing the architecture of the interface. “Much of my work is human ware—how do humans interact with information,” he notes. Or, simply put, making sure the user (customer) can find the right button, and have the button connected to the correct data.
The necessity of training vets to access the system has been minimal. “Remember that we have a new breed of veteran now, those that are returning from operations in Iraq and Afghanistan,” Dr. Kasi says. “The way they stayed in touch with their families was through Skype, with e-mail … they are very computer literate, and they almost demand this service.” Evidence of the essential convenience of the service is seen in the time signatures of access. “Most of the secure messages come after 5pm, sometimes all through the night,” he says.
The information is filtered for appropriateness—highly confidential information like HIV status or consultation notes that may be misunderstood—is withheld. Otherwise, a complete history is available for outside consultations, emergency room visits, or trips to the pharmacy. “This is important in rheumatology; our patients are on dangerous drugs. If they can print out what they’re on and avoid polypharmacy, or interactions, or maybe recent lab results show a low white count,” Dr. Kazi notes, outside providers can—and should—be aware of the complete medical picture.
As with the Georgia program, emphasis is placed on enabling the patient to be treated as close to home as possible. VA healthcare facilities are concentrated in certain areas. Veterans are not. Further, beyond Blue Button, telemedicine is coming online at the VA, and the rheumatology section has initiated an e-consultation program for outside providers.
However the connection is made, Dr. Kazi is adamant about the result. “You can improve your care by being informed,” he stresses. “The electronically engaged patient gets better outcomes.”
Rheumatology Research
From the privacy of their own homes, with mouse in hand, rheumatology patients may also participate in research. Kaleb Michaud, PhD, assistant professor of internal medicine, rheumatology in the College of Medicine at the University of Nebraska Medical Center in Omaha, explains: “I spent the last ten years working with Fred Wolfe at the National Data Bank for Rheumatic Diseases (NDB) and we’ve learned the value of having a long-term, observational, epidemiologic study looking at rheumatic diseases like RA.” For the NDB, patients filled out detailed questionnaires regarding their history, as well as ongoing health issues over time.
A new initiative, just launched, called the Arthritis Internet Registry (AIR), will use a newly formulated questionnaire, which will be augmented with detailed blood work. The goal is a deep dive to determine risk profiles, prognostic indicators, and the long-term outcomes of standard or novel treatments.
“One of my reasons for being in this field,” says Dr. Michaud, “is my frustration with what little progress in the field I perceived in the 80s and 90s.” One potential way forward revealed itself after working with the NDB. “We found that the most powerful predictors of future disease severity had less to do with what we observed of the patient in the clinic and more from how the patient reported how they’re doing over a questionnaire,” he says. A patient’s perception of his or her own limitations or improvements over time proved highly informative. The next step for Dr. Michaud was to then link such observations with clinical evidence.
Enter Quest Diagnostics. “It’s one thing to fill out something online, but quite another to get someone to donate blood,” Dr. Michaud notes. After becoming aware of the initiative, Quest volunteered their nationwide network of associations to do blood draws free of charge at the location of greatest convenience to the patient. In exchange, Quest will have access to de-identified information about the patients.
In the first year since launch, AIR has enrolled 1,000 patients, and the immediate task at hand is to verify diagnosis with the patient’s physician. Second, Dr. Michaud must determine if results for the cohort are generalizable—as with clinical trials, research participants tend to be highly motivated and responses may be skewed.
Initial queries have been encouraging. “We’re finding that, for the RA patients at least (fibromyalgia and lupus patients are also enrolled), we’re getting over half that are seropositive,” Dr. Michaud says. This rate correlates with historical clinical cohorts. “We were afraid that we weren’t going to be getting true RA, and so far that is unfounded,” he notes.
Participation in the program is moderate for the moment, because AIR lacks both funding and patient awareness. However, Dr. Michaud is confident that once word gets out he will be able to hit his target of 20,000 participants out of an estimated 5 million-plus patients in the United States with rheumatic disease.
As a rheumatologist, I need to be focused on the complex problems, defining a treatment plan, and dealing with complex complications. If I’m in the room telling somebody that their blood count is normal, that’s a waste of everyone’s time
—William McClatchey, MD
Patient’s Care, Patients Caring
To facilitate patient care, Quest Diagnostics has also designed and offered up, free of charge, several smart-phone apps. A big fan of this technology is rheumatology patient Ashley Boynes-Shuck, of Pittsburgh, Pa. “I can get my test results, and it has options to email or fax the results to myself or to any of my doctors. That’s really nice because, on occasion, I’ll see someone who is not in the University of Pittsburgh Medical Center [UPMC; an organization with e-records and patient portals].” Within UPMC, Boynes-Shuck can view test results, get appointment reminders, and see prescription information online.
These electronic facilitations are important to Boynes-Shuck, but if lost would not be of critical concern. After all, she has been on the receiving end of healthcare for the last 17 years—well before the Internet age—after having been diagnosed with juvenile RA at age 10 years. No, what keeps Boynes-Shuck, now 27, really plugged in is the patient experience that can be shared online. This outlet is vital for someone who, at such a young age, became irreparably different from other children, and thereby isolated.
“I struggled with that very much. When I first got diagnosed there were not even many pediatric rheumatologists in Pittsburgh …,” she says. “I got bullied, people made fun of my walking with a limp. Even close friends didn’t really understand what I was going through because they could not relate to it … Arthritis? Isn’t that something that their grandma had?”
Years later, Boynes-Shuck is not only able to share these experiences with others now, but she can reach out to those who may be feeling that same way through her blogs, “Wellness with a Side of Life, Please” sponsored by the Arthritis Foundation for the mid-Atlantic region, as well as “Let’s Move Together,” which has a national readership. There are also two Facebook pages, “Arthritis Ashley” which is mostly of her personal experiences, and “Rheum to Grow” with a focus on teens and young adults with arthritis and related conditions.
Unfortunately, Boynes-Shuck continues to have plenty to write about, having been recently diagnosed with lupus overlap syndrome and celiac disease. “It’s been a great help, not so much diagnostically, but the support system that the web has provided has been vastly helpful,” she says. “I consider it part of my healthcare. I don’t think I would be as emotionally and mentally healthy as I am if I didn’t have that outlet.” After all, she points out, even grandparents are on Facebook now—why not use it to benefit your health?
Neil Canavan is a journalist based in New York.
