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THE SCHWARTZ CENTER ROUNDS |
Department of Medicine, Division of Hematology-Oncology, Massachusetts General Hospital, Boston, Massachusetts, USA
Correspondence: Richard T. Penson, M.R.C.P., M.D., Instructor in Medicine, Hematology-Oncology, Massachusetts General Hospital, Cox 548, 100 Blossom Street, Boston, Massachusetts 02114-2617, USA. Telephone: 617-726-5867; Fax: 617-724-6898; e-mail: rpenson{at}partners.org
Access and take the CME test online and receive one hour of AMA PRA category 1 credit at CME.TheOncologist.com
LEARNING OBJECTIVES
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Learning Objectives
Abstract
Presentation
Dialogue
Discussion
Conclusion
Relevant Cancer Websites
References
After completing this course, the reader will be able to:
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ABSTRACT |
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The 20th century success of the Internet is now translating into changes in 21st century medical practice. The changes brought about by the Internet have at once facilitated and complicated the practice of medicine. Physicians and patients are challenged to take advantage of the increased opportunities afforded by Internet access while being mindful of its drawbacks and the limitations to virtual communication. The case of Karen Parles, one of the authors, is presented. Karen developed locally advanced lung cancer and used the Internet to research her diagnosis. She found the information on lung cancer limited and confusing, and, in response, developed a website devoted to empowering lung cancer patients in their search for information and support (http://www.lungcanceronline.org). Here we discuss issues surrounding patients’ use of the Internet for health information and communication with health care providers. The value of information-seeking as a coping mechanism is debated, and concerns are raised regarding confidentiality of electronic communications and the logistics of physicians adopting e-mail as a mechanism for communicating with patients.
Key Words. E-mail • Oncology • Support • Psychosocial • Internet
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PRESENTATION |
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| A constant challenge was to separate the websites containing inaccurate information, including those containing unsubstantiated or fraudulent claims about cancer cures, from reliable sites containing quality information.
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Karen:
My internist thought the nodule in my lung was probably histoplasmosis, something I had picked up from spending time in caves as a child. My pulmonologist wasn’t sure what I had, but he was fairly certain it wasn’t lung cancer. During my pre-op visit, the surgeon told me he thought I had a hamartoma. I didn’t get the impression from any of my doctors that they were concerned about lung cancer. However, I was told a biopsy was necessary to rule out that remote possibility. A few days before my surgery, I got on the Internet and I started looking for information. I wasn’t quite sure what I was looking for, but I found the process time consuming and frustrating. I sifted through staggering amounts of useless material, and the relevant information I did find varied widely in quality. In spite of this, I somehow stumbled across an article called "Evaluation of the Solitary Pulmonary Nodule," part of a Continuing Medical Education (CME) module on a virtual hospital site [1]. Despite my lack of medical background, it was clear from reading this article that there was a significant likelihood that my lesion was malignant. And because of what I read, I was better prepared for the diagnosis that followed. I view this initial experience with the Internet as mixed—what I learned in the end was useful, but there was a high aggravation factor and a feeling that I came upon the information by happenstance.
After I met with my oncologist for the first time, my head was reeling. I was trying to come to grips with a mind-numbing situation. I had an advanced lung cancer with a grave prognosis. I sought a second opinion over 200 miles away from my home in New York, and I elected to pursue experimental treatment that involved removing my lung and pleura. My coping mechanism was to learn as much as I could about my cancer and my treatment, and the most convenient avenue for this was the Internet.
Once I had a diagnosis, searching for medical information was much more straightforward and productive. Searches using the terms "lung" and "cancer" brought me fairly quickly to the National Cancer Institute’s website (http://www.cancer.gov) and the University of Pennsylvania’s Oncolink (http://oncolink.upenn.edu), both excellent information sites with factual information on cancer, treatment, and supportive care. The information on lung cancer was pretty brutal, and I have to say I didn’t find anything encouraging about my condition. But the more I learned, the more I felt in control. And the more I read, the more I understood what I was up against, and somehow this made it easier to face. One of the best sites I found when I was newly diagnosed was Steve Dunn’s Cancer Guide (http://www.cancerguide.org). This site is not peer reviewed or evidence based, but for a cancer patient seeking to make sense of a world turned upside down, it provides something valuable—an overview of cancer and Internet cancer information from a survivor’s perspective. Despite being committed to my treatment plan and having complete faith in my doctors, I was intent on learning about the latest research on treatments for lung cancer. The best sites I found for this were Medscape (http://www.medscape.com/px/urlinfo), American Society of Clinical Oncology (ASCO) OnLine (http://www.asco.org), and Medline (http://www.ncbi.nlm.nih.gov/entrez/query.fcgi). Medscape in particular has excellent summaries of cancer conferences by oncologists and offers weekly cancer e-mails to provide updates of developments in cancer research. The ASCO site presents in-depth patient-oriented information, and also provides access to its conference abstracts. Used judiciously, Medline is a powerful research tool for identifying emerging therapies and locating review articles on specific topics.
Despite the power of the Internet for positive use by patients, there is also a great potential for misuse by patients. While harmful information exists in other media, the Internet, poses a unique hazard since medical misinformation exists alongside peer-reviewed information created by credible sources. Anyone can publish on the Internet, and information can be incomplete, out of context, or wrong. A constant challenge was to separate the websites containing inaccurate information, including those containing unsubstantiated or fraudulent claims about cancer cures, from reliable sites containing quality information. In some instances, I lacked the knowledge, experience, and context to evaluate what I found. On the rare occasions when I thought something might be relevant to my case, I shared it with my doctors during office visits.
| There are relatively few face-to-face support groups for lung cancer. LUNG-ONC is available 24 hours a day, 7 days a week, and there is no commute.
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The most important thing I found on the Internet, however, was not a website, but an online cancer discussion group called LUNG-ONC (http://listserv.acor.org/archives/lung-onc.html). LUNG-ONC is one of approximately 100 cancer mailing lists run by the Association of Cancer Online Resources (ACOR) (http://www.acor.org). Through LUNG-ONC, I was immediately able to connect with hundreds of people with lung cancer. This was invaluable—there is really no substitute for connecting with others who are surviving with your disease. The LUNG-ONC community consists of patients at every stage of disease and treatment, long-term survivors who provide inspiration to the newly diagnosed, family members, and health professionals with connections to the community. With the nonsmokers in the group, I discussed issues related to having a smoker’s disease and what it’s like to feel invisible within a stigmatized group. I found young mothers with lung cancer, with whom I could share that particular heartache. During chemotherapy, I shared information on dealing with various side effects. I also learned that other patients often have answers to practical questions, like where to buy a wig, or what type of pillow to use after surgery. Prior to my pneumonectomy, I was able to communicate with several people who had undergone pneumonectomies themselves and to benefit from their experiences. There were also several group members who offered useful advice on how to handle medical paperwork and insurance issues that inevitably become a major source of stress for every cancer patient. This sharing of practical or "nonclinical" information is typically seen by both patients and physicians as outside the physician’s purview. I do not know where this type of comprehensive support could be found other than on the Internet. There are relatively few face-to-face support groups for lung cancer. LUNG-ONC is available 24 hours a day, 7 days a week, and there is no commute. Because of the sheer numbers of patients online, I was able to find others just like myself, and I no longer felt like the only 38-year-old nonsmoker on the planet with lung cancer.
By far the most difficult time for me emotionally was after treatment stopped. I knew that a recurrence meant that I would die from my disease. Over the months following my surgery, I experienced pain in my hip and my leg, and I also had headaches. As a result, I had several bone scans and MRIs, and I experienced the inevitable anxiety that went with them. All of these tests were coordinated via e-mail with my oncologist. Online communication was of particular value in my case, because the geographic distance between the hospital and my home often precluded office evaluations of these problems. In one particular instance, I remember having searing leg pain for several days that woke me up one morning at 2:00 a.m. The terror of being convinced you have a bone metastasis in the middle of the night is truly beyond words. To deal with my fear, I went to my computer and sent my oncologist an e-mail describing the course and the nature of my pain. Just the act of doing that gave me some emotional relief, and I was able to go back to sleep. It happened that when I awoke in the morning I found an e-mail that he had sent at 6:30 a.m. telling me to go ahead and get a bone scan. This allowed me to proceed without going through the inevitable phone tag and saved hours of time and stress waiting around the house for a callback.
When I finished my treatment, I had a very difficult time knowing that I was at high risk of recurrence and yet hearing from my doctor that there was no further treatment available to me, nothing else I could do to reduce my risk of recurrence. This was a hard thing for a proactive person like myself to cope with. I showed my oncologist a couple of trial protocol summaries I thought I might be eligible for, but he took a look at them and said that they were not appropriate for me. I realized that I had unrealistic expectations of the appointment, and I left his office feeling discouraged. The visit hadn’t gone how I had wanted, and I was very aggravated. When I got home, I calmed myself down and I wrote an e-mail clearly presenting my concerns and explaining why I felt like I needed to be doing something. I sent the e-mail to him, and he replied fairly quickly with a recommendation that I pursue some nutritional or herbal remedies if I really felt that I needed to be doing something actively, although he couldn’t say for sure if the remedies would help. I felt much better after this exchange, which I wouldn’t have felt comfortable having over the phone.
| I would say that the information I learn on the Internet enables me to ask different questions, to affect the agenda, and to feel involved in my care.
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My time on the Internet is now spent helping other patients. I do this through LUNG-ONC and also through a website that I developed called Lung Cancer Online. Lung Cancer Online centralizes reliable lung cancer resources so that patients and their families can find high-quality information quickly and easily. Lung Cancer Online receives approximately 30,000 visitors each month and includes annotated links to over 1,000 lung cancer resources. Some of the more popular links include: a patient guide to biopsy and pathology; a directory of lung cancer support groups; a compilation of practical information about ports; information on how to arrange for home care; support information for caregivers; a website for evaluating alternative therapies; and advice on why and how to get a second opinion. Patients and loved ones can easily access detailed, quality information on almost any lung-cancer-related topic in seconds. To keep Lung Cancer Online current and useful, I use the questions I receive from site visitors and the concerns raised in LUNG-ONC discussions to inform the content of my site. My online work with lung cancer patients and families is an extremely rewarding, and no doubt therapeutic, pursuit.
The Internet has impacted my relationship with my oncologists and my surgeon in a very positive way. I would say that the information I learn on the Internet enables me to ask different questions, to affect the agenda, and to feel involved in my care. Online support that I receive from other patients often relieves anxiety and resolves minor issues that I would otherwise raise with my doctors. At times, my doctors and I have used e-mail to facilitate our communication and to compensate for the difficulties inherent in providing care to an out-of-town patient. I believe that the Internet can be an effective tool for improving patient care, but only when used in the context of established patient-doctor relationships based on mutual trust and understanding.
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DIALOGUE |
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Oncologist:
Patients often want to explore areas that they don’t understand. In this information age, everyone feels as if they’re the only one who hasn’t discovered the information on a particular topic. The Internet is a wonderful tool because it provides instant information. Books are also wonderful resources and can provide a tremendous amount of information, but they quickly become outdated, especially relating to treatment issues.
The time crunch coincided with this information age. All of us are asked to see more patients in less time. I think many patients and families want to be better prepared to ask questions, so that they can use their time with their treatment team to focus on their major concerns. Information from the Internet, books, and other sources can help them to accomplish this.
Karen:
With a cancer diagnosis, patients often don’t hear anything after the word "cancer" and find they have questions later on when their physicians are unavailable. The Internet is accessible when physicians may not be. The immediacy of the Internet is a big advantage. For many patients, it’s one o’clock in the morning when you want to know something. You’re feeling anxious, and you can get online and get answers immediately. I’ve established as part of my website an area of survivor’s stories, which links visitors to lung cancer survivors who have put their stories or their websites on the Internet. Right away, someone with a diagnosis can quickly get online and get some hope, and I think that’s important.
Oncologist:
You had fairly innovative therapy. Do you think that anything that you came up with on the Internet affected how you were treated?
Karen:
I wouldn’t say that any information I found altered my care, but I did find that I became much more informed about complications and side effects related to treatment. It was very helpful to learn about how other post-pneumonectomy patients are living. There are people with heartburn, chronic nerve pain, and numbness, or who feel as if they are having a heart attack when they stand up. There are enough of us discussing these topics now that researchers are beginning to look at these issues and it’s getting into the literature.
Oncologist:
Where do cancer patients generally find the clinical trials that they bring in to their physicians?
Karen:
Unfortunately, for cancer patients, there is no single comprehensive resource for locating clinical trials. The National Cancer Institute’s database of cancer trials, found at http://www.cancer.gov, is the best place to start. There are also links to every NCI-designated cancer center—and most other major academic cancer centers—so patients can access their websites individually to find out about protocols that way. For industry-sponsored trials, CenterWatch (http://www.centerwatch.com) is a good source. Recently, several Internet-based clinical trials search services have been developed to help patients find and evaluate clinical trials. Although there is a significant patient demand for this type of service, it is unclear who will ultimately succeed in this area. I find the most useful information on clinical trials often comes from other patients. Clinical trials are a common topic of discussion in online forums: patients enrolled in trials share details of their experiences, patients weighing decisions among several trials ask for input from other patients, and patients ask for assistance in locating appropriate trials. Most importantly, patients help other patients to learn the right questions to ask when considering a clinical trial.
| With this new information about trials and research on various diseases out there on the Internet, it’s possible that there will be a migration of patients to cancer centers that are offering the research trials away from community hospitals.
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Nurse:
As an oncologist, what was your reaction when you were questioned about specific protocols that Karen found in her Internet research that you may not have been familiar with?
Oncologist:
There are always going to be questions that you don’t have the answer to, and there will be new trials you haven’t yet heard about. It’s really not that different from a patient asking you about an article that came out in The New York Times this morning that you haven’t seen. Generally I say, "That sounds interesting, we’ll have to look into it more down the road." I think that’s all you really can say.
Karen:
With this new information about trials and research on various diseases out there on the Internet, it’s possible that there will be a migration of patients to cancer centers that are offering the research trials away from community hospitals. The community oncologists may feel very threatened by this. I get that sense from the online conversations that I have. If you hear about the latest trial online, that’s the one you want to enroll in.
Information Overload?
Director of Cancer Resource Room: There are different ways of coping when one gets a diagnosis of cancer. Karen’s particular coping mechanism was to accumulate all the information that she could on her diagnosis and the treatment options. Other people experience a great deal of anxiety when faced with such a load of information. Oftentimes people will come to the resource room, request information, but really find that to read it and to go through it creates more anxiety for them.
Karen:
It’s important to recognize that in being a patient, there’s a cycle that you go through where you want information at some points and not others.
Director of Cancer Resource Room:
We let patients know that they don’t need to look at all the information right away, that people need information at different times in their treatment. Some patients choose to appoint a family member or a friend to look through the information. It can be very positive for a family member to assume that role in the patient’s care.
Karen:
I agree. I frequently get questions via my website from family members who are seeking information for their loved ones. With lung cancer, patients often want to avoid reading the bleak statistics, so having family members filter the information can be especially helpful to prevent anxiety and yet still allow patients to get the critical information they may want or need at any given time.
Social Worker:
How do you direct patients who are overwhelmed by the information that they find on the Internet?
Karen:
I would suggest other resources on the Internet, like patient support groups. You can ask other patients specific questions about your treatment or your diagnosis, questions that would take a lot of time to research on the open Internet. Patients will respond with their experiences, which is very helpful, as opposed to being inundated by unfiltered information. Another option is to use the gateway or "directory" websites that exist for any given topic. The National Library of Medicine’s consumer website, MedlinePlus (http://MedlinePlus.gov), is an example of this concept, as is my website, Lung Cancer Online. Using both my experience as a patient and my skills as a librarian, I have evaluated, annotated, and indexed high-quality lung cancer resources and services. Patients can use a directory site like Lung Cancer Online in a targeted way to access only those resources that address their concerns at that time. I would also advise patients to get recommendations for specific sites from trusted sources such as physicians, nurses, social workers, librarians, and other patients. I think that health care professionals in their roles as information providers should know about the best Internet resources in their specialty, or at least be able to refer patients to someone who can guide them.
| I think that health care professionals in their roles as information providers should know about the best Internet resources in their specialty, or at least be able to refer patients to someone who can guide them.
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Oncologist:
I’m concerned about the message that patients will be overwhelmed and anxious as a result of information overload and that such anxiety is even a bad thing. I don’t think we have any data to support this idea one way or the other. My personal experience is that information is very helpful to patients, and they are able to use it and integrate it. Anxiety can be positive if it changes behaviors or provokes a search for more information.
Director of Cancer Resource Room:
I think that anxiety is not necessarily bad, but it is important to recognize and acknowledge how the patient or family is feeling. We have seen a number of people come in feeling guilty about not being able to sort through and process information. Some can’t even look at the information. They feel like it’s something they have to do to be a good patient. I think that just acknowledging what they are feeling often helps them to move on and to take in more information.
Karen:
I think health care providers have the opportunity to provide guidance to patients who might be overwhelmed by what they find on the Internet by referring them to one or two particular resources. It is helpful to remember that the Internet can be used in a focused way to locate both online and "offline" patient information and support services. I think patients who experience anxiety from searching for information on the Internet generally deal with that stress by just stopping the activity. They may or may not decide to get back online at some point, and it’s their choice. But I think any efforts made by doctors to guide patients to reliable Internet resources are immensely helpful and greatly appreciated by patients.
Thoracic Surgeon:
The issue of anxiety is real. Sometimes patients don’t even want to see their x-rays in the examining room, but they don’t have any choice. It can be easier for the patient to go to the Internet and find a website that allows them some choices. They can decide if they want more information or if they want to talk with other patients, and all of this can happen in a personalized setting such as the patient’s own home.
E-mail as a Form of Communication Between Patients and Doctors
Oncologist:
Did you approach your e-mail relationship with Karen with any trepidation, keeping in mind that some patients can abuse it or use it inappropriately?
Oncologist:
It’s a difficult issue. I would say that only a small percentage of my patients communicates with me online. As we negotiate the future of communication, it’s not a question of whether you want to communicate with people by e-mail, it’s a question of how. Let’s face it, the reality is that we’re all getting a lot of our communication this way, it does make life a lot easier, and health care providers often communicate with one another this way. There are certain circumstances in which e-mail is not an appropriate form of communication between patients and doctors. For example, there have been instances in which patients will report emergent symptoms to their physicians over e-mail, which can delay their care.
| As we negotiate the future of communication, it’s not a question of whether you want to communicate with people by e-mail, it’s a question of how.
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Thoracic Surgeon:
I think that e-mail and Internet use by patients is positive. It requires some participation by the patients in their care, which is very important. Speaking as a surgeon who spends little time in his office during the daylight hours and most of his time in the operating room, communicating via e-mail is very convenient. I don’t have to find a phone number, or worry about catching someone at home or at work, and instead I can communicate with them directly via e-mail. On the other hand, I usually don’t have patients reporting acute complications, so I am speaking from the standpoint of someone who is not typically dealing with emergent issues arising with patients who might communicate that to us via e-mail.
Karen:
Obviously e-mail is not appropriate for urgent or emergent issues; guidelines need to be established at the outset when starting an e-mail relationship with a patient. In my case, the e-mail relationship developed in the context of an established doctor-patient relationship. In actuality, the issues that we e-mailed about were more logistical than clinical. Many times I needed to make sure that my physicians received my lab tests or films. When I make a phone call, sometimes I don’t hear back right away. When I send a fax, I’m not sure it’s there. When I send an e-mail, I get a response. So in that sense it is much easier for the patient.
Oncologist:
Finding the time to respond to an inundation of patient e-mails is a concern. Is there a way to resolve the issue of physicians being overwhelmed by patient e-mails?
Karen:
Ideally the physician would have a website with frequently asked questions and links to other websites, and the physician could just tell his or her patients to go to the website. There are many doctors who are starting to do this.
Oncologist:
I have a growing percentage of patients that I connect with online. Since I’ve started doing a lot of consults, one problem that I’ve experienced is remembering who the patients are that e-mail me. I don’t want to give out misinformation for their questions, so usually I’ll get the chart to remind myself, or I’ll e-mail back a reply of, "call me." When I actually hear a voice I will remember the patient, but over e-mail I honestly can’t remember everyone.
Oncologist:
Certainly e-mail is not as good as seeing someone in person with a chart, but an e-mail can be easier than a phone call because you have a little bit more time to think about the patient’s question and answer it to their satisfaction.
Director of Cancer Resource Room:
I think as a caregiver, if you’re not comfortable with communicating with patients over e-mail, then you need to have a dialogue about your preferred method of communication.
Oncologist:
But one of the problems of e-mail is its immediacy. Sometimes with an emotionally charged issue, it’s good to slow down. I can see potential problems with e-mails being fired off without putting enough thought into their content.
Karen:
I can’t comment on dealing with an individual patient in the context of doctor-patient e-mail, but for the cancer online discussion groups run by ACOR, there are guidelines and rules of "netiquette" that each member agrees to as a condition of membership. For misunderstandings and other disputes, there are volunteer list managers who enforce the guidelines, which include a ban on religion, politics, and personal attacks. Commercial advertising is also not allowed—the online groups strive to be a safe area for patients.
Karen:
I find that I am often more successful in focusing on the topic at hand in an e-mail exchange than in an office visit. While I always try to be mindful of the demands I place on my doctors’ time, I know that I tend to digress and tell anecdotes during an office visit. In an e-mail message, I am better at organizing my thoughts and editing myself. As a result, I think e-mail is more efficient and satisfying where I am looking for a circumscribed answer to a direct question. For anything that requires extended give and take, I don’t think e-mail is appropriate.
Confidentiality
Oncologist:
What role does confidentiality play? Is there ever a topic that you can’t communicate online to a patient, and does that play a role in your consideration of how you use online communications?
Thoracic Surgeon:
I haven’t worried too much about confidentiality, because I wouldn’t say anything over e-mail that I wouldn’t say in a quasi-public forum. From my perspective, e-mails are additive to the normal methods of communication with the patient. If you already have an established relationship with a patient, you understand the topics you should be talking about over e-mail and the topics that should be discussed in more private circumstances.
| Internet-derived health information may alter the traditional office interaction between patient and provider, as patients may come to their visits better informed with more specific questions and potentially more ready to participate actively in decision making regarding their care.
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Karen:
When it comes to the Internet, patients are concerned, and rightfully so, that their personal medical information will be accessed by insurers or employers—not to mention unscrupulous marketers. To protect themselves, patients need to read website guidelines to be sure confidentiality is maintained and personal information is not sold to third parties. There are no guarantees that websites follow their own policies, however, so the best course is not to give out any information you would like to remain confidential.
The Internet as a Community
Director of Cancer Resource Room:
I think that the participation of patients and families on the Internet is a way of building community. Patients often use it to connect with other people who have a similar diagnosis and a similar life circumstance.
Karen:
Online support groups welcome family members and caregivers in addition to patients. This is an extremely important point since these individuals often have stress equal to or greater than the patient, yet they often do not receive the support and services they need from the health care system. Online groups are one way that these individuals can connect with others in similar circumstances. Cancer affects families and friends as well as patients, and the online groups do a wonderful job of creating a sense of community and an atmosphere of support for everyone affected by cancer.
Oncologist:
When you’re talking to other patients online, aren’t you replacing the kind of intimacy that’s so special in a support group with a different sort of relationship in an online support group?
Karen:
I actually joined a face-to-face support group two months ago, a year and a half after my diagnosis. I never felt like I needed one personally, but I was asked to join to help out with the group. There’s a big difference between the two types of groups, but both have much to offer patients. For me, the limited number of people in the face-to-face group is a problem. Since lung cancer is overwhelmingly a disease of 60- to 70-year-old former smokers dealing with advanced lung cancer, there are fewer people like myself in the face-to-face groups. These older patients have very different life circumstances than I do. With the online group, there are many younger and healthier patients like myself, who can help me deal with the particular issues that are bothering me, such as how to deal with a deadly cancer as the mother of young children. While there are many patients who discuss issues related to death and dying in online groups, members have the option of avoiding information or exchanges that might cause them additional stress by using the delete key. The diversity of people found in a larger online group like LUNG-ONC is extraordinary. There is a real community that encompasses a wide range of both patient and caregiver experiences—the kinds of conversations and the personal relationships that develop are amazing. For some people, the intimacy and in-person connection of a face-to-face support group are what’s important to them. And yet there are many online group members who aren’t interested or able to join a face-to-face support group. On the other hand, I’d say the majority of people in my face-to-face support group also participate in Internet support groups or chat rooms. So I don’t see it as an "either/or" thing.
| Such regulation by the Federal Trade Commission can help cancer patients feel more confident about health information on the Internet, but the nature of the Internet as a decentralized and ever-changing entity makes comprehensive regulation impossible.
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Oncologist:
The bottom line is you want people to get the emotional support, information, and personal care that they need. There are multiple ways to get that, whether it be online or through face-to-face support groups.
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DISCUSSION |
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Roots of the Internet
The idea of linking various computers together originated in 1957 with the U.S. Ministry of Defense’s creation of the Advanced Research Projects Agency (ARPA), which was conceived during the Space Race and Cold War to decentralize a potentially vulnerable computer technology. ARPA eventually began to focus on computer research, and ARPANET was launched in 1968 with the connection of computers at UCLA, UC Santa Barbara, Utah University, and Stanford University. ARPANET went public in 1972 when its technology was unveiled at the First International Conference on Computers and Communication in Washington, D.C. The development of e-mail and communication languages followed, and many organizations and universities developed their own versions of ARPANET for their systems. In 1982, ARPANET adopted the transmission control protocol/internet protocol (TCP/IP) communication language standard, from which arose the World Wide Web (WWW) in 1991 [4, 5]. Best estimates suggest that there are now more than 500 million Internet users worldwide [6]. Physicians use the Internet to communicate via e-mail, to access electronic medical journals, to perform bibliographic searches, and to submit abstracts and manuscripts for publication. Many physicians are now creating practice-related web pages to facilitate patient communication and provide patients with relevant health information. Recognizing the value of the Internet as a communication and information tool, ASCO has launched an initiative to provide members with personalized home pages through ASCO Online and also created a website called "People Living with Cancer" (http://www.plwc.org), which is dedicated to supporting the information needs of cancer patients [7].
The Internet as a Source of Health Information
In this age of technology, the Internet is increasingly becoming an important source of information for patients. Prior to the Internet’s rapid dissemination of medical information, patients had little choice but to brave the library stacks full of medical journals, or trust the opinions of their physician. With so much information at their fingertips, the number of patients who are empowering themselves by utilizing the Internet for health information is exploding. In their battles with cancer, patients are looking to arm themselves with information. According to the November 2000 Pew Internet and American Life Project report, 52 million Americans, over half of the American Internet-user population at the time, reported using the Internet to find health information for themselves or others [8]. A single search on www.google.com in July 2002 revealed over 4.6 million hits for "health information" and over 2.4 million hits for "cancer information."
Psychotherapist and author Nira Kfir writes, "the diagnosis of cancer starts a process that has all the characteristics of crisis. Cancer...almost always...finds us unprepared" [9]. In an attempt to cope with a cancer diagnosis, patients often want to seek out as much information as possible about their disease in order to regain control. At different points during their illness, cancer patients are seeking a cure, different treatment options, information on side effects, potential clinical trials, and support [10, 11]. Patients cite the Internet’s constant availability, its anonymity, and its wealth of information as its greatest strengths [8]. Fifty percent of patients report that the information they found on the Internet led them to ask new questions of their doctor or to seek a second opinion, and more than 70% report that the information influenced a treatment decision [8]. For the most part, breast cancer patients who discuss Internet-derived cancer information with their oncologists perceive that their health care providers listen to them [11]. Internet-derived health information may alter the traditional office interaction between patient and provider, as patients may come to their visits better informed with more specific questions and potentially more ready to participate actively in decision making regarding their care.
| Despite its limitations, which include the risk of misinformation, loss of privacy, and information overload, the Internet can positively contribute to patients’ needs for support and information
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Quality Control
There is no governing body regulating the content and accuracy of health information sites. Berland et al.’s audit of health care websites reported on 18 English-language and 7 Spanish-language websites. Those dealing with breast cancer were on average 91% accurate, with 67% offering "more than minimal coverage" of the material as determined by a range of experts. Amazingly, 53% of the website reviews of English-speaking sites noted at least one obvious conflict in the information content of the sites [12].
The U.S. Department of Health and Human Services’ Healthy People 2010 publication included an objective to "increase the proportion of health-related World Wide Websites that disclose information that can be used to assess the quality of the site" [13]. In an effort to provide the public with some measure of confidence in the major health websites available on the Internet, a number of organizations (Internet Healthcare Coalition, American Medical Association, Hi-Ethics) have developed codes of ethics concerning reliability and confidentiality of information [14–16]. Without comprehensive application of these guidelines, there remain many health websites that can potentially provide consumers with misleading information. Other organizations (MedCERTAIN, HONcode, URAC) have created seals of approval that health websites can apply for, based upon established and published criteria for quality of content, much like the codes of ethics developed by the other organizations [17–19]. The accreditation programs are voluntary, however, and it is not clear that these services have the same standards of quality or monitor the websites with equal rigor [20].
To crack down on the fraudulent marketing of unsubstantiated health products over the Internet, the Federal Trade Commission (FTC) along with the Federal Drug Administration and other law enforcement agencies began an education and enforcement campaign called Operation Cure.All in 1997. Since its inception, the campaign has targeted companies falsely claiming to cure or safely treat a variety of serious illnesses, including cancer. Many of the companies chose to settle with the FTC by agreeing to remove unsubstantiated health claims, and to provide a disclosure warning of any adverse risks associated with their products [21]. Such regulation by the FTC can help cancer patients feel more confident about health information on the Internet, but the nature of the Internet as a decentralized and ever-changing entity makes comprehensive regulation impossible. Thus, it is important that patients learn the skills necessary to evaluate what they find on the Internet and that they consult with their physicians before purchasing products or following recommendations found online. Physicians can take an active role in helping patients sort through health information sites by recommending high-quality, trusted sites to their interested patients and by referring them to guidelines for evaluating health information on the Internet [22].
Confidentiality
Confidentiality of patients’ medical information has become more of a concern with the advent of electronic medical records and medical communications. Firewalls, one solution to the problem of electronic security, are programs that block or permit electronic traffic of supposedly secure information between two networks [23]. Firewalls have intrinsic weaknesses that can be exploited by Internet hackers to gain access to information. Understandably, 71% of Internet users seeking health information report being "very concerned" about online privacy [8]. The issue of confidentiality works both ways as well, as patients visiting Internet chat rooms and support groups have also been the sources of preliminary leakage of research trial results, which can affect the outcome of the studies and can result in inflated or tumbling stock prices.
| Physicians can assist patients in using the Internet by guiding patients to online resources.
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The Standards for Privacy of Individually Identifiable Health Information Rule were issued in April of 2001 by the U.S. Department of Health and Human Services (DHHS) as mandated by the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The rule requires health insurance plans, health care providers, and health care clearinghouses ("covered entities") to protect patients’ medical records or other individually identifiable health information in electronic, paper, or oral communications. The covered entities are required to adopt written policies denoting who has access to the information and when it can be disclosed, to elect a privacy officer responsible for implementing the policies, to train staff in the execution of the policies, and to ensure that academic and business associates also protect patients’ privacy [24]. The DHHS has also issued a proposed rule for security, which mandates that covered entities assess vulnerabilities and take measures to protect the security of electronic information transactions, including adhering to standards for digital signatures if they are used [25].
Electronic Patient-Physician Communication
E-mail communication between physicians and patients can be useful for answering questions that patients might have, easily documenting an exchange, ensuring lab results were received, requesting prescriptions, sending appointment reminders, and scheduling. Not having to play phone tag or to make private phone calls from the workplace are particular benefits of electronic over telephone communication. One group found e-mail was a useful way for a distressed patient to express her emotions about her impending death from cancer, even without responses from her providers [26]. While e-mail communication between providers and patients serves various important functions, there are many confidentiality and medicolegal concerns that have not yet been resolved on a national or global basis. The American Medical Informatics Association published Guidelines for the Clinical Use of Electronic Mail with Patients in 1998 [27], which offers many suggestions for appropriate and safe use of e-mail in the medical arena. These suggestions include obtaining written informed consent from patients interested in communicating via e-mail, using encryption technologies to preserve patient confidentiality, and determining specifications for the types of information not to be transmitted over e-mail [27]. In the consent form, patients should be encouraged to use a private e-mail address instead of workplace address, and should be made aware that e-mail exchanges may become part of their medical record or viewed by other members of the medical office.
Interstate e-mail consultations have yet to be thoroughly addressed, as the states that have instituted legislation differ in their medical licensure requirements. Some states require consulting physicians to obtain full, limited, or special medical licenses prior to offering medical advice, and only a few states provide reimbursement for telemedicine services. Many states have yet to take any legislative action regarding telemedicine licensure. While some groups are proponents of a national medical license, the issue is contentious due to its relationship to the idea of states’ sovereignty and the 10th Amendment to the U.S. Constitution. Physicians are advised to be cautious with interstate e-mail consultations since the penalties of practicing medicine without a license can be severe [28].
Coping with Information Overload
As Steve Dunn candidly explains in his www.CancerGuide.org website, there are pros and cons to seeking out information about one’s cancer diagnosis, and not everyone will weigh them equally. Some patients will feel empowered and better able to make treatment decisions, while others will feel intimidated by medical lexicon and statistics, confused by uncertainty, or frightened by negative information. The decision to research one’s cancer diagnosis is extremely personal and routinely fluctuates over the course of the illness [11, 29]. Considering adjuvant chemotherapy treatment for breast cancer, one participant in a recent interview-based study said, "In the end I got so confused...I wasn’t too keen to get too much input that was going to suggest I shouldn’t [have chemotherapy]. I think I consciously censored myself. I didn’t look chemotherapy up on the Internet; I just have recently, and it’s really shaken me" [30].
| By supporting patients in their efforts to use the Internet, doctors may increase patient satisfaction and enhance doctor-patient communication.
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It can be helpful for physicians to proactively respond to how a patient chooses to confront cancer information, even though this preference may change over time. A patient’s information-seeking style can be formally determined with the Miller Behavioral Style Scale (MBSS). High "monitors" actively seek out information to help cope with the threat of their disease and their mortality, to gain a sense of control when their world seems to be spinning out of control, to increase certainty and predictability, and to aid in their decision making regarding treatment options. Low "monitors" avoid pertinent health information to escape their fears and minimize worry and depression [31]. How information is presented to these two types of patients may profoundly influence their interpretation, foster hope, and stifle despair [9].
Community Building and Support
For many patients, the Internet serves as a portal to connect with other patients struggling with similar life issues who can provide each other with a sense of solidarity and reassurance. Being diagnosed with a potentially fatal illness is a life-changing event that is often best understood by other cancer patients. Until recently, the only avenue for cancer patients to provide support for one another was the traditional face-to-face support group. Supportive-expressive group therapy has been shown to reduce anxiety, improve mood, and reduce perception of pain [32]. Some studies have suggested a survival benefit for cancer patients as well, although this finding is controversial. David Spiegel appropriately comments, "Curing cancer may not be a question of mind over matter, but mind does matter" [33]. Group therapy is typically underutilized because many patients have difficulties attending due to transportation or cultural barriers.
Internet support groups offer similar benefits to patients, including empowering the participants, reducing isolation, providing a community of support, and providing a forum for patients to actively help others cope [34]. In addition, patients can access the group anonymously at any time from the comfort of their own homes. The likelihood of finding other patients with very similar life circumstances who are dealing with the same cancer care issues is much higher on the Internet, especially for patients residing in less-populated areas or with rarer tumors. Potential drawbacks to Internet support groups include the absence of a facilitator to guide the group, the lack of nonverbal cues that frame discussion, the risk of possible social isolation, and the possible dissemination of incorrect information.
There is some concern that virtual communities can be isolating rather than connecting by replacing strong real-world relationships with superficial transitory ones, and that this might increase depression in certain individuals. Several recent studies have addressed the issue of an association between Internet use and social isolation with conflicting results. A 2000 study by the Stanford Institute for the Quantitative Study of Society (SIQSS) found that increasing Internet use correlated with a decrease in social activities, as did a 1998 Carnegie Mellon University study [35, 36]. Norman Nie, Stanford professor and the SIQSS study’s principal investigator commented, "The Internet could be the ultimate isolating technology that further reduces our participation in communities even more than television did before it" [36].
In direct contrast to the SIQSS finding, studies from UCLA and the Pew Internet and American Life Project suggest that Internet use is associated with more time spent socializing with friends and family [37, 38]. The link between Internet use and social isolation/involvement may reflect the personalities of the users rather than portraying a generalized psychosocial effect or a drift in culture. In support of this, a combined follow-up/extension study from Carnegie Mellon University found that extensive Internet use was associated with increased loneliness and decreased community involvement only in introverts, with extroverts showing the reverse pattern [39]. Furthermore, the relationship of the Internet to the user’s social world probably depends upon the individual’s primary activities on the Internet. Some of the Internet’s functions are connecting and would likely be associated with increased community involvement, such as e-mail and virtual support groups. The May 10, 2000 Pew Internet and American Life Project report termed e-mail "the isolation antidote," and reported that 59% of users who e-mail family members are in contact with their relatives more often due to e-mail, and only 2% are in contact less often with relatives whom they e-mail [40]. Using Internet support groups as an adjunct to other strong social supports is likely to improve, rather than dissipate, a patient’s sense of connection with others.
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CONCLUSION |
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TopLearning ObjectivesAbstractPresentationDialogueDiscussionConclusionRelevant Cancer WebsitesReferences |
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Relevant Cancer Websites |
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TopLearning ObjectivesAbstractPresentationDialogueDiscussionConclusionRelevant Cancer WebsitesReferences |
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CANCER.GOV (NATIONAL CANCER INSTITUTE)
http://www.cancer.gov
Extensive patient-oriented information on cancer, including peer-reviewed summaries on treatment, screening, prevention, and supportive care. Features a searchable database of clinical trials, with in-depth information on finding and understanding clinical trials.
ASSOCIATION OF CANCER ONLINE RESOURCES (ACOR)
http://www.acor.org
Not-for-profit organization offering over 130 online support groups for specific cancers and cancer-related conditions.
PUB MED (NATIONAL LIBRARY OF MEDICINE)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
Searchable database of MEDLINE abstracts to more than 12 million journal articles. Includes a help menu and tutorial on how to search the database as well as information on how to access full-text documents.
MEDSCAPE
http://www.medscape.com
Commercial website aimed at health care professionals. Highlights include conference summaries of major oncology meetings and a weekly e-mail service providing updates of developments in cancer research.
STEVE DUNN'S CANCER GUIDE
http://www.cancerguide.org
Provides guidance and insight from a patient’s perspective on how to find answers to questions about cancer, and most importantly, how to learn which questions to ask.
AMERICAN CANCER SOCIETY
http://www.cancer.org
Comprehensive information on cancer. Particular areas of interest include a searchable database of local support services and a "Cancer Survivors Network" community.
MEDLINE PLUS (NATIONAL LIBRARY OF MEDICINE)
http://www.medlineplus.gov
Consumer website provides a gateway to Internet resources, arranged by topic. Covers specific cancers, drug information, medical reference, medical tests and procedures, and directories to doctors and hospitals.
CANCER CARE
http://www.cancercare.org
Not-for-profit organization providing support services for cancer patients and caregivers. Offers useful information on coping with cancer, its treatment, and effects. Provides practical advice on managing insurance and financial issues.
AMERICAN SOCIETY OF CLINICAL ONCOLOGY (ASCO)
http://www.asco.org (ASCO Online)
http://www.plwc.org (People Living with Cancer)
ASCO Online maintains two excellent cancer websites, one for its membership and one aimed at patients.
Compiled by Karen Parles, M.L.S., Editor, Lungcanceronline.org (November 22, 2002)
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FOOTNOTES |
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TopLearning ObjectivesAbstractPresentationDialogueDiscussionConclusionRelevant Cancer WebsitesReferences |
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See http://www.TheOncologist.com/misc/RelevantCancerWebsites.pdf for updated websites for patients and physicians.
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REFERENCES |
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  J. Tieman and D. Rawlings Letter to the editor Journal of Research in Nursing, May 1, 2009; 14(3): 279 - 280. [PDF]
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 C. E. Beaudoin and C.-C. Tao Modeling the impact of online cancer resources on supporters of cancer patients New Media Society, April 1, 2008; 10(2): 321 - 344. [Abstract] [PDF]
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 G. Eysenbach The Impact of the Internet on Cancer Outcomes CA Cancer J Clin, November 1, 2003; 53(6): 356 - 371. [Abstract] [Full Text] [PDF]
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