E-patients: The Genie is Out of the Bottle

Melissa received a metastatic lung cancer diagnosis just a few weeks after celebrating her 40th birthday. Within hours of hearing her diagnosis from her primary care physician, she started searching the Internet about her disease and what to expect in terms of treatments. What she found was overwhelming. “I felt like it was a certain death sentence,” she confided, after reading many bleak statistics and horror stories about how unpleasant treatment would be. Her husband added, “it was scary, and when you go on the Internet, it gets even scarier: you can lose hope quickly.” Fortunately, within a couple of days, she was able to see an oncologist who could provide some perspective and hope, and she continues to do extremely well more than a year later and on maintenance chemotherapy. She participates regularly in online activities and actually blogs on her own Website as well as for a national lung cancer organization, though she finds that many cancer Websites don’t resonate with her particular needs. She is an e-patient, a term coined by Dr Tom Ferguson, who led the e-Patient Scholars Working Group funded by the Robert Wood Johnson Foundation, to represent the growing population of patients who are “equipped, enabled, empowered, and engaged in their health and health decisions” (e-Patients White Paper, 2007).

Melissa’s experience of turning immediately to the Internet for answers reflects the emerging reality within the United States. According to the Pew Research Center, more than 61% of American adults now seek out healthcare information online, a percentage that has risen rapidly over the last decade. Oncologists discussing how practice has changed also readily corroborate these trends, noting that patients are coming armed with new questions and concerns, and often with a list of potential options they have compiled from scouring the Internet. Some oncologists consider this new vanguard of well-informed patients a favorable development, while others consider it yet another challenge in their practice of medicine as they are now expected to address an increasing number of questions and concerns generated from online communities. But as with nearly all complex social issues, the reality is that the e-patient movement engenders a gray area that will usher in neither a bright new age of medicine, nor its downfall. Although the benefit of this movement remains debatable, its growing impact is not.

Oncology is a setting particularly well suited to this initiative. While there is little need for dedicated patient study of the innocuous Gilbert’s syndrome or many other relatively non-threatening conditions, the stakes are literally life and death with cancer, so patients have a great incentive to ensure that they are aware of a full range of treatment options and receiving the best care possible. Most other life-threatening medical conditions are emergent situations that require immediate medical care (most people wisely call 9-1-1 before doing an Internet search for “crushing chest pain AND shortness of breath”), whereas the clinical decisions made for cancer are generally less time-sensitive, offering a time frame during which patients can become informed participants rather than passive recipients of medical care.

Patients as Partners

The e-patient movement provides some clear benefits for oncologists in particular and cancer care in general. One of the most important is support for patients and caregivers, ranging from emotional to practical. The Association of Online Cancer Resources aggregates people directly affected by dozens of different common cancers and now coordinates over 150 different mailing lists that reach thousands of people each year. These participants share questions, discuss symptoms, and offer emotional support to each other. Many common cancers also have dedicated online discussion forums, such as the Lung Cancer Support Community hosted by Lungevity, and the Breast Cancer Support community sponsored by the Susan G. Komen Foundation. Participants can gain a better understanding of why they are undergoing multiple staging studies and on the symptoms they should expect as they embark on a new treatment. Users provide hopeful stories of clinical successes and a sympathetic connection for people who need to vent their fears and frustrations about having cancer. For those who lack access to local support groups of people facing similar challenges, and even for many who do, the online connections people make to others around the country or world can provide deep and meaningful support.

For those affected by uncommon cancers, online communities can provide a lifeline not only of support but critically important clinical information not available elsewhere, even from local oncologists. For example, someone with adenoid cystic carcinoma (ACC), a rare malignancy, is quite unlikely to find a local physician with significant knowledge of this entity, nor could this patient’s oncologist rely on the few pages of scant information provided on this cancer in a 3000-page general oncology tome or in the leading oncology journals since there is almost no published literature on the subject. The Adenoid Cystic Carcinoma Research Foundation, however, provides a list of specialists around the United States in various disciplines, all with a stated interest in ACC. In addition, dozens of people affected by ACC can share information through the Adenoid Cystic Carcinoma Organization about clinical trials and even promising anecdotal experiences, which are arguably of significant value in settings where so little published data exist. Indeed, as the saying goes, “in the land of the blind, the one-eyed man is king,” and oncologists may welcome aggregated online reports that summarize clinical experiences that may eclipse the meager information provided through more academic channels.

At the same time, e-patients can often find excellent medical information to supplement what can be offered by their oncologist and medical team. With patients and caregivers often turning immediately to the Internet, even before their initial appointment with an oncologist, they can potentially get an early understanding of the prognosis and general treatment options for their particular cancer. They can also corroborate the information they receive locally, which can be especially helpful when their oncologist outlines a terminal prognosis and relatively limited treatment options. In addition, the reality is that oncologists cannot hope to remain completely updated on the latest information for every cancer, so a well-informed patient may well become aware of very timely research and new treatment options. For example, e-patients on lung cancer Websites are currently sharing information about the newly identified EML4-ALK mutation in non-small cell lung cancer, for which the investigational agent PF-02341066 has been reported to have a greater than 50% response rate and prolonged benefit (Shaw, 2009; and Abstract A6.4), though many oncologists are not aware yet of such recent developments. Dissemination of such information through inquiries from e-patients may well contribute to a faster transmission of emerging research findings within the professional medical oncologist community.

Beyond providing potential options for patients to consider with their oncologists, the e-patient movement has facilitated clinical research, particularly in less common disease settings. A patient and caregiver group focused on gastrointestinal stromal tumors (GISTs), known as the Life Raft Group, has centralized a collection of patients who are eager to hasten the pace of scientific research. The organization has published data based on these patients’ experiences with the side effects of imatinib, and has taken a proactive role in conducting patient-based research that it shares regularly with scientific leaders in the fi eld. As noted on the organization’s Website by Dr George Demetri, medical director of the Center for Sarcoma and Bone Oncology at the Dana Farber Cancer Institute in Boston, “The new research model pioneered by the Life Raft Group is making it possible for patients and family members to contribute to clinical research for their diseases in unprecedented ways.” Other groups are currently working to develop their own patient consortia who wish to volunteer for clinical trials and even provide their own tissue samples if it can accelerate the pace of research and improve understanding of their particular cancer. With the bottleneck that most clinical cancer research faces because of the limited patient enrollment into trials, leveraging the desire for ready-made patient consortia to cooperate in completing clinical trials provides a unique opportunity for harmaceutical companies, investigators, and patients to collaborate in the study of new treatments.

A Double-Edged Sword: Challenges

Borne of the Online Patient Experience

Of course, as with any medium, there is a wide range in the quality of information presented on the Internet and accessed by e-patients. While content provided by oncologists and professional societies is typically vetted for accuracy, content on many sites open to the general public contain a combination of appropriate insights and links to other Web-based information along with recommendations from medically unqualified individuals and promises from individuals and organizations that may be providing false hope. Perusing discussion forums from the general public, topics range from questions about managing side effects to exhortations such as “don’t let your doctor say no” to various interventions of dubious medical value, such as radiofrequency ablation for multifocal metastatic disease and unproven predictive assays for chemosensitivity of tumors, some marketed aggressively to the general public. Patient testimonials about everything from laetrile to dichloroacetate, sometimes replete with links to Websites that facilitate opportunities to obtain these agents, offer the conviction that unproven or even potentially detrimental interventions can yield the “miracle” that the conventional oncology world is too circumspect to offer. Some vocal members of e-patient online communities betray their suspicion of the medical system in the prevalent discussions of a myth that the oncology and pharmaceutical industries collude to deprive cancer patients a secret cure because treating cancer is too profitable.

There is also the danger of online information undermining the relationship between a patient and his or her oncologist. This may come in the form of an opinion about a different chemotherapy regimen described on a Website provided by medical professionals. Another patient in an online forum may describe their negative experience with that same treatment and recommend an alternative based on their anecdotal experience. Patients may read a recommendation about a different physician or institution from another member of the online patient community, along with the reasonable but arguably over-emphasized recommendation that patients obtain multiple opinions. Finally, a patient may discuss their symptoms and share their concerns more readily to a relatively anonymous online environment, even when this information may be important for their oncologist to know.

Oncology e-Patients: Present and Future

The Internet is currently a leading source of healthcare information for patients, and its importance is likely to increase in coming years. Information will be provided from a range of sources, some highly credible and a potential benefit to the oncology world, and some far less credible and likely detrimental to both patients and oncologists. As oncologists, we may participate in and shape the educational opportunities, or we may stand on the sidelines and cede the content and tenor of the online information primarily to people with less understanding and sometimes questionable motives.

Several years ago, I started a nonprofit organization called the Global Resource for Advancing Cancer Education (GRACE) as a primarily online resource for patients with cancer as well as other oncologists. Starting with a core of content from within my leading clinical and research focus of lung cancer, I and several other lung cancer experts have provided discussion of what are widely considered to be the current best practices in various clinical settings, as well as presentation of and commentary on new clinical data coming out of journals and key oncology meetings. These brief summaries, written using blog software, and in a language accessible to the general public, include key figures and links to journal abstracts. The goal is to provide patients and caregivers with a thorough overview of potential risks and benefits of various approaches, in contrast with the media-driven sound bites that hype too many reports as a potential miracle breakthrough in an attempt to drive up viewership. These summaries can offer the same information provided in a detailed one-on-one discussion with a patient, but are now freely available to people around the world at any time.

In an effort to provide valuable summary information in a range of formats, GRACE also offers brief podcasts that include general information about treatment approaches for various cancers in an audio-visual format that largely includes slide presentations with synchronized narration. These are available through the GRACE Website or through iTunes, YouTube, and other online media resources. Finally, there is an online question and answer forum, mediated by the GRACE faculty, which includes medical oncologists and other cancer specialists. This forum provides general information but not medical advice for particular cases, in keeping with the understanding that this content is meant to supplement the information provided by a patient’s own medical team.

Take-home message

GRACE is only one of many credible sources of information provided and mediated directly by healthcare professionals. The argument in favor of providing these opportunities directly to patients is that the relationship between physicians and patients is now affected by sources outside of medical offices, and this trend will only become more pronounced in the future; this genie isn’t going back in the bottle. Physicians can be part of the Internet- based conversations or potentially cede their role as the primary educators on healthcare issues and be forced to react to healthcare information that is readily offered by dubious sources.

Dr West is a medical oncologist and medical director of the Thoracic Oncology Program at the Swedish Cancer Institute in Seattle, Washington. He also serves as president of the nonprofit organization Global Resources for Advancing Cancer Education (GRACE).