Medical knowledge is a social process:

The conversations that occur around

artifactual data are always more

important than the data themselves.

-John Lester

CHAPTER SIX

[edit]   ^ Learning from e-Patients

e-Patients can take many different routes to empowerment. Some join an online support group or read about their condition through extensive online searches. Others consult resources such as Medline to learn about the latest research and treatments for their health concern. But some e-patients discover that current online resources don't meet their needs. Often working in partnership with innovative health professionals, they strike out on their own looking for a resource, technology or modality of care that meets their particular needs.

Three examples of this type of innovation are discussed in this chapter. We consider the implication of Braintalk, the online patient information and support community for neurological concerns described in Chapter 4. The second example looks at how e-patients drove the creation of online mental health services, or e-therapy. The third example describes the growing practice of a concierge practice model of medicine, where e-patients become true partners in their health care choices with doctors who limit their practice to such patients. These examples show how 21^st century medicine can learn new approaches from e-patients.

[edit]   ^ What Happens When e-Patients Take the Lead?

The resourcefulness and creativity of BrainTalk's members continue to astound its developers. After establishing the online resource, Lester and his colleagues noticed that BrainTalk patients had created a new chat room called Club Avonex. "It was developed by a group of Multiple Sclerosis (MS) patients who were giving themselves home injections of a MS drug called Avonex," Lester recalls. "Most found the self-injection process extremely stressful. So, even though they lived in many different time zones, they all logged on to the Club Avonex chat room at the same time so they could inject themselves simultaneously. This made it possible for participants to offer each other real-time guidance and support-before, during, and after the injection." ^[1]

But as the community has grown, it has also faced its own share of challenges. "A recent hardware malfunction taught us a number of lessons about resources like Braintalk," says Hoch. "First, if there were ever any doubts about how important the resource is to its users, shutting it down unexpectedly quickly removes those doubts. E-mails from concerned users about the fate of Braintalk started within minutes of it going offline. Extensive user networks rapidly involved, began talking to each other and pooling resources and contacts, to learn more about what was going on and how they could help. Frankly, such hardware failures are inevitable, but this one taught us how critical it is to immediately create a status page informing visitors about the fate of the site and repairs."

"The second lesson is that a resource this important to a large community cannot be based on the efforts of a single individual," Hoch continued. "Unfortunately, in many cases very large communities are indeed dependent on an individual or small group of individuals. I suspect we are in a transitional time for such communities and many of them are moving to commercially hosted solutions where backups, redundancy and hardware resources are easy to arrange. But there are trade-offs in cost, privacy, and direct control. In our case, the technical management of Braintalk rests completely in one person's domain. It is a labor of love, and the community appears to want and encourage this kind of arrangement. On the other hand, those same community members can become pretty irate when there is a hardware failure and apparent breach of the implicit trust between them and their community administrator. Clearly, given how critical the community is to its users, we must build backup systems and ways to recover rapidly from hardware failure."

Having learned about the value and dynamics of online groups through the team's e-patient research, Hoch, a neurologist specializing in epilepsy, now routinely invites his patients to participate in a private online support community for epilepsy. And while the patients own and run the online community, Hoch often takes an active part in their discussions. As group members get to know one another and become familiar with each group member's unique neurological conditions, he's working with them to explore more sophisticated forms of co-care-new ways in which clinicians and patients can collaborate in providing more convenient and sophisticated medical care for group members.

[edit]   ^ Professionals Offering Online Mental Health Help

By the time she finally went looking for an Internet therapist, Martha Ainsworth, a freelance Web developer and communications consultant, had been leading online support groups for more than a decade. So she knew what valuable help and guidance they can provide. ^[2] She also knew that such help is not always enough. She had seen a large number of e-group participants admit online to despair and suicidal feelings that they might be embarrassed to acknowledge face-to-face. She wished that all those who found it easier to reveal their innermost thoughts online could have online access to a professional therapist.

When Ainsworth found herself facing her own dark night of the soul, she looked for just such an online therapist. ^[3] After several hours of searching, she came upon a Web page that began, "Welcome to the Mental Health Cyber-clinic."

Ainsworth created a Web site (http://www.metanoia.org) to help other e-patients find qualified e-therapists and work with them effectively. And even though she stopped updating the site in 2002 (when she became community producer of Beliefnet.com, the Internet's largest multi-faith spirituality Web site), the metanoia.org site is still one of the best resources on the subject. Articles available there include:

[edit]   ^ Reaching Those Who Wouldn't Ordinarily Consult with a Professional

Although online mutual self-help support groups like BrainTalk have been around since the 1970s, ^[5] online counseling, or "e-therapy," is an invention of the Internet boom years in the mid-1990s. Driven by the increasing popularity of the Internet, people with mental health concerns started seeking out mental health professionals for advice, consultations, and yes, even psychotherapy online.

"e-Therapy is not just psychotherapy transplanted to an online medium," says White Paper Advisor John Grohol, PhD. "It is something completely new. And for some patients, it appears to be not only more convenient, but also more effective, than conventional psychotherapy." Psychologist Grohol, who founded the pioneering mental health Web site Psych Central and wrote The Insider's Guide to Mental Health Resources Online, coined the term 'e-therapy' in 1993.

"From a public health point of view, e-therapy offers a way to reach millions of patients with psychological and mental health conditions who would be unlikely to seek face-to-face therapy," Grohol says. "One in five Americans has a diagnosable psychological problem, yet nearly two-thirds of those affected never seek professional help. ^[6] Some feel they can't afford it. Some find it too embarrassing to discuss sensitive issues face to face. Others come from cultures in which seeking professional help for mental health problems is considered a sign or weakness or instability. But a new generation of mental health professionals is now learning to use the Internet to extend a helping hand to those who would never darken a therapist's door. And as a result, thousands of e-patients are now finding online mental health services more accessible than ever before."

"Look, e-therapy will never replace traditional face-to-face therapy," says Grohol. "But it can provide people with an introduction to the benefits of the therapeutic relationship and process. It can be a stepping stone to regular therapy for those who feel overwhelmed with the idea of talking to a psychotherapist face-to-face."

The International Society for Mental Health Online, co-founded by Grohol, Ainsworth, and others in 1997, published a white paper in 2000 entitled "Suggested Principles for the Online Provision of Mental Health Services," a set of guidelines for e-therapy (available on their website at www.ismho.org). More information on e-therapy can be found at metanoia.org, and in Grohol's series of essays on "Best Practices in e-Therapy".

[edit]   ^ Learning what Patients Really Want from Clinicians

For many years, Harvard's Rushika Fernandopulle has been a tireless champion of healthcare reform. Until recently, he led the Harvard Interfaculty Program for Health Systems Improvement, a group of senior Harvard healthcare experts seeking innovative solutions to the largest, most difficult problems facing healthcare. He and colleague Susan Sered wrote a book in 2005 entitled, Uninsured: Life and Death in the Land of Opportunity, ^[7] which is a scathing exposé of the difficulties and hardships faced by Americans without health insurance. So when Dr. Fernandopulle recently announced that he was leaving his job at Harvard to join two other Boston internists at a retainer-based medical practice in a nearby suburb, some of his medical colleagues didn't know quite what to think.

Retainer-based medicine is a new type of medical practice in which physicians provide a limited number of patients with a specific set of services in exchange for an annual fee. Its detractors sometimes call it "concierge medicine." Critics charge that such practice models are simply a way for greedy doctors to get more pay for less work by offering their services to the rich while ignoring the poor.

Dr. Fernandopulle admits that in a few cases, this may be true. "There are a few retainer-based practices in which physicians limit their practices to 50 wealthy patients that pay $20,000 apiece for the privilege-and spend most of their time playing golf," he says. "But most clinicians who have established retainer-based practices are simply seeking relief from the soul-numbing responsibilities of caring for too many sick patients in too little time. It's so frustrating to be forced to practice medicine in a situation in which people expect so much of us and we have so little time and attention to give them."

But for some reform-minded clinicians, like Fernandopulle and his colleagues, the retainer-based practice model is the most promising new opportunity for clinical innovation in their lifetimes.

"A completely new model of clinical care is needed," Fernandopulle suggests. "Even at a world-class medical center like Boston, it's gotten so bad that most of us take the defects for granted. Patients expect long delays in getting doctor's appointments. They expect to have to wait long hours in our waiting rooms. They expect rushed, time-pressured visitsfrom overworked, distracted clinicians. They expect to be treated rudely by clinic staffers. They expect that it will be difficult or impossible to contact their clinician in a medical emergency.

"In the traditional clinical model, the doctor essentially works for the insurance company, not the patient," Fernandopulle says. "And clinicians can only do what the insurance companies will pay for. If our patients say, 'We want to communicate with you by e-mail,' we doctors have to say, 'Forget it! Your insurance won't pay for that.' If they tell us they want to learn more about their illnesses, it's just too bad. We have 30 more patients waiting. If some innovative clinicians say, 'We want to make electronic medical records available to patients on the Net,' the insurance companies say, 'We won't pay for that either.'"

"The retainer-based model gives us a chance to say, 'Okay... We're really going to change things. We're going to find some exciting new ways for clinicians and patients to work together. We're going to work with our patients to develop new models of empowerment-based, patient-driven care. And if we succeed, the new practice patterns we create could provide a workable business model for widespread healthcare reform."

At the core of Fernandopulle's vision is a radically different clinician-patient partnership in which patients take on a higher degree of responsibility-for their own care and for running the clinic-while clinicians make themselves available to patients in more convenient and supportive ways. This underlying philosophy can be seen in the invitation he and his colleagues offered to prospective clients on their Web site when it was first launched: ^[8]

Fernandopulle and his colleague Pranav Kothari developed their new practice model during a two-year research project, sponsored by the Harvard Interfaculty Program for Health Systems Improvement, in which they traveled around the country visiting the most innovative clinics they could find. In the end, they adopted the membership-based model because the insurance companies refused to pay for a number of things they considered vital:

"In the traditional clinical practice, the insurance company comes first, the provider institution comes second, physicians come third, nonphysician staffers come fourth, and the patient comes last," Fernandopulle says. "How else can you explain the difficult time patients have getting an appointment or getting through to their doctor in an emergency? How else can you explain the excessive waiting times, the inadequate length of clinical visits, clinicians who see 40 or 50 patients in a day, and the many petty humiliations the average patient must endure?

"Why do we treat without teaching, prescribe without explaining, issue 'doctor's orders' without discussing the full range of possible alternatives, and provide care without routinely providing patients with copies of their records? Why do we make patients come to the clinic for information we could give them by phone or e-mail? Why don't we allow patients to provide their own care-or to provide care for others?

"The traditional practice sees patients as the passive recipients of professional services. But our practice sees patients as the central players in the whole healthcare process. They initiate most interactions by e-mail or phone and we help them deal with their medical concerns at their convenience. We'll see you right away, whenever you need us. If you find yourself facing a new medical condition, we'll introduce you to expert patients with the same disorder. We'll invite you to join an online support group where doctors and patients work together to provide care for everyone. And if there's a medical procedure you'll be needing regularly, we'll teach you-or a family member-how to do it.

"Our underlying strategy is to approach the problem from both ends," Fernandopulle says. "We'll do all we can to help members stay healthy. If they become ill, we'll help them become expert patients. And we'll provide them with the training and support they need to provide most of their own medical care themselves. This will free us up to spend more time with the patients who really do need to see us."

Fernandopulle and Kothari aren't practicing in this new way just to reduce healthcare costs, he insists. "We're trying to find a more sustainable and sensible way to practice medicine in the age of e-patients. But we suspect that in the long run, this new empowerment-based, patient-driven model will be less expensive than the old doctor-centered approach. We're hoping to inspire insurance companies to pay for aspects of this new model that they currently refuse to support."n

[edit]   ^ References