The informed patient
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Forging a collaborative relationship in the information age

Patients have access to a volume and depth of medical information unthinkable for most of medicine’s existence. They can go online to access journals and studies, patient advocacy groups, and patient support groups. Meanwhile, Medicare’s meaningful use program for electronic health records emphasizes the integration of patient portals through which any patient can log in and access their record, lab results, and other health information. Dermatologists seeking Maintenance of Certification through the American Board of Dermatology are required to complete a patient feedback survey twice within a 10-year cycle. And reforms to the health system under the Affordable Care Act (ACA) focus on giving patients more information about their doctors and their care.

One result of all of these changes is a more engaged and empowered patient population. For dermatologists, the question is: How to balance the benefits of engaged patients with the need to bring their own training and expertise to the fore and ensure accurate diagnoses and appropriate treatments? 

A greater range of tools

Patients, especially those with long-term, chronic, or painful conditions, have always been naturally invested and active in their own care process, according to dermatologist Steven Shama, MD, who leads a session on the physician-patient relationship each year at the Academy’s Annual Meeting. The difference today, he said, is the efficiency with which patients are able to access huge volumes of information about their conditions, their fellow patients, and even their physicians.

A patient who realizes he or she has a disease that has a support group available online “can access multiple experiences from people in their exact situation in a couple of minutes,” Dr. Shama said. “I respect that, because wouldn’t I do the same thing? I think that a lot of material on the Internet is beneficial but also has its limitations.” [pagebreak]

The Internet has lowered barriers and allowed rapid growth in the size and effectiveness of patient advocacy organizations and in their ability to disseminate information to their members. The result, according to Julie Block, the CEO of the National Eczema Association (NEA), is a patient population that has rapidly developed more sophistication.

“We’ve been conducting patient conferences since 2002, and with each conference we have seen a raised level of sophistication among patients,” Block said. “People are much more knowledgeable about the intricacies of this disease — including in-home management, treatments, research, and so on. There’s evidence of increased knowledge directly attributable to the information and education available to them.”

While the number of patients actively participating in online discussions, message boards, and other forums is impressive, dermatologists should also be aware that while active participants are the most noticeable voices, they’re by no means the only ones. Those active voices influence a legion of non-participating readers who simply monitor these discussions or this information with a hands-off approach, a practice known as “lurking.”

Research by the Nielsen Norman Group, which looks into Internet user behavior and psychology, has demonstrated that in most active online communities, as little as 10 percent of active users contribute, with just 1 percent of them being heavy contributors. The remaining 90 percent of participants are listening and internalizing the discussion of that 10 percent of highly empowered patients. This suggests that it is important for physicians to support constructive, accurate information dissemination online and in patient networks — and the NEA is studying this. Block said that learning about the behavior and opinions of these empowered patients will help physicians and other groups learn how the system can be improved. [pagebreak]

“We have just awarded a research grant for a crowdsourcing exercise to find out what people are saying about eczema on social networking sites, and to begin to categorize it,” she said. “We want to find out how patients are engaging with each other, and what treatment and management techniques keep coming to the fore from a patient perspective.”

The National Psoriasis Foundation (NPF) also tracks patient attitudes and behaviors via its TalkPsoriasis community (www.TalkPsoriasis.org), and found that practical advice on psoriasis and psoriatic arthritis is the most desired content among users.

Further, the NPF found that patients with more severe psoriasis were more likely to be engaged in multiple online communities. Many of those patients seek information and support online if they self-report not having support from friends and family in dealing with their condition. The research underscores the importance of online participation to empowered patients on both an intellectual and emotional level, according to Noe Baker, public relations manager for the NPF.

“One of the most common comorbidities, or associated health conditions, with psoriasis is depression. People with psoriasis are more likely to have anxiety and low self-esteem. We often hear from people who say that they felt like they were alone or that they had never met someone else with psoriasis before finding others like them on our social media sites,” Baker said. “For a complicated disease like psoriasis, getting input on sites like TalkPsoriasis.org and the NPF Facebook page from others living with the condition can be invaluable. It lets people feel like they aren’t alone, that they have a voice.”

Information about doctors

In addition to information about their condition and fellow patients, patients now have greater access than ever to information about their doctors. Apart from the much-discussed doctor rating websites (see sidebar below), the ACA requires the Centers for Medicare and Medicaid Services (CMS) to publicly report performance data about physicians enrolled in Medicare. [pagebreak]

Physician Compare is the public face of this effort, currently reporting the contact information of physicians, their educational background, their board certifications, their hospital and group practice affiliations, their billing policies relative to Medicare, and any quality programs, such as the Physician Quality Reporting System (PQRS) the e-prescribing program, or the EHR incentive program, in which they participate. In early 2014, CMS plans to add data on quality measure reporting for practices and accountable care organizations that use the group practice reporting option. It will also add Clinician and Group Consumer Assessment of Healthcare Providers and Systems data for ACOs and for group practices that include 100 or more professionals that participate in the group practice reporting option.

To ensure they’re presenting an accurate picture to patients who use Physician Compare, dermatologists should check the accuracy of their data on the site two or three times a year. Physician information is exported from the Medicare enrollment system known as PECOS, as well as the National Plan and Provider Enumeration System, to Physician Compare. If that information is incorrect, it’s important to begin the process of correcting misinformation as soon as possible, as CMS estimates it takes three to six months for changes to be reflected in Physician Compare. Physicians with errors in their information can log in and change their information at https://pecos.cms.hhs.gov/pecos/login.do. More information on the process is available at www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/physician-compare-initiative/Updating_and_Editing_Data_on_Physician_Compare.html.

Beneficial information

While the availability and quality of information available to patients is generally seen as a positive development, it’s no replacement for physician training and experience, according to dermatologist Lisa Pawelski, MD, whose preferred go-to patient information site is the Academy’s Dermatology A to Z. The empowerment of the patient can sometimes create tension when a patient’s self-diagnosis or research doesn’t square with the medical fact, she said. [pagebreak]

“I constantly see people coming in thinking they have a diagnosis and in reality, it couldn’t be further from the truth. It turns out there’s a reason I have 14 years of post-secondary education,” said Dr. Pawelski, who completed an internal medicine residency prior to her dermatology residency. “The problem with encouraging people to go online is that they’ll frequently find the wrong thing. If they’ve really bought in to that information, it’s almost like I have to deprogram them before we can continue productively. That can be very draining on a dermatologist.”

On a personal level, according to Dr. Shama, physicians can often feel doubted or disrespected when a patient fails to follow treatments or brings up a disagreement with diagnosis because of some knowledge acquired through Internet searches. Coming to terms with those feelings is a necessary step in addressing issues with patients, he said. It helps to remember that the motivation for such behavior is simply natural self-interest.

“There’s no doubt that this information sometimes gets in our way. We think: These people want to control me, they’re doubting me, maybe they’ve heard negative things about me,” Dr. Shama said. “Those are all things that go through your mind, but in the end, they have a right to all of this information, because it’s their life or their well-being at stake. Most of these people are doing this innocently. You have to value and appreciate their level of concern and involvement.”

To keep a patient’s research activity productive, Dr. Pawelski has paper handouts for more common diagnoses with links to websites she feels have the most reliable and helpful information. Some of these contain navigation instructions, which she said her older patients in particular appreciate.

“I know that people want to seek out information and look at pictures — especially in dermatology. I really want them to go to websites that are curated and written by professionals. Dermatology A to Z is so much more helpful than a well-intentioned site riddled with inaccuracies,” Dr. Pawelski said. “It’s when they hear a term and just go home and do a search that we run into problems with the quality of information. Once I give them a preferred’ site that I think is well-run, I encourage them to do a little homework before our next visit.” All content on Dermatology A to Z is reviewed and approved by the AAD Council on Communications before it is posted. [pagebreak]

Managing difficult cases

One of the problems with patients having access to reams of research data or anecdotal evidence, Dr. Shama said, is that the patient will often bring all of it to the next visit and start with a handful of relatively involved questions on it. Though her patients usually refrain from mentioning online research from questionable sources, Dr. Pawelski occasionally has visits that feature patients coming in “loaded with ammo they found online.” This can eat into productive visit time, as well as other patients’ time, she said.

“The problem is the time it takes to go through the information they’re bringing in compared to the time I should be spending with them overall,” Dr. Pawelski said. “I’m normally very patient and encouraging of discussions about options and treatment. But some people are sure that they have condition A, and though we know in less than 10 seconds that it isn’t that, they won’t be swayed otherwise.”

To sidestep long discussions about the provenance of the information or the validity of the research, Dr. Shama often offers to follow up specifically on patient research over the phone, following the visit. In the course of a five-minute call, he said, he’s usually able to address the patient’s points and come to a productive agreement on diagnosis or treatment going forward. Typically, he said, he can recognize the quality of the information supplied by the patient with a brief skim after hours.

“Calling something they’re concerned with unscientific, or being dismissive of this information, might help you get past it faster, but it won’t make the patient feel any better. Instead, I’ll tell them that I can’t possibly read everything they’ve brought in front of them and process it, but that I’d love to follow up their concerns with a phone call in the next day or two after I’ve diagnosed and recommended treatment,” he said. “They hear that you’re listening, that you’re acknowledging their concerns, and that you’ll address them. That can really make a difference in them feeling that you are respecting them and should also help with compliance.” [pagebreak]

Another of the difficulties presented by the patient networks that spring up online, Block said, is the reinforcement of fears over certain treatments.

“Our medical board members are truly interested and fascinated by some of the things that are said online about treatments. One of the issues discussed is around steroid-phobia, which is a frustrating phenomenon to the medical practitioner,” Block said. “As we understand and as the literature suggests, topical corticosteroids are still the standard of care for eczema. However, you have a host of people who believe they’re harmful for one reason or another, and they talk to each other, and people coming across the discussion and reading about it are now presented with this confusion and anxiety. It’s a national issue that affects treatment.”

In cases of drug fears, Dr. Shama said that the physician can often achieve a better result by meeting a patient halfway with their anxiety. A short course of systemic steroids, for example, can demonstrate improvement to the patient in a brief window and assuage fears about using the drug. If the patient has an over-the-counter or homeopathic remedy that they use and vocally prefer, he said, Dr. Shama would ask the patient to use the prescription on half of their body and the patient’s method on the other half. This would most often take care of the issue, he said.

“Patients come in with data and you have to develop your listening skills. I like to be challenged up to a point and discuss options with my patients,” he said. “I learn from every patient. They have needs, and you’re there to help, but they may not necessarily trust you fully at first. You have to embrace that process of learning about them and how to work with them.” 

 

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