From
- Editors' Note and Dedication
- Acknowledgements
- Foreword by Lee Rainie and Susannah Fox
- Preface
- Introduction
- Hunters and Gatherers of Medical Information
- Content, Connectivity, and Communityware
- Patient-Centered Networks: Connected Communities of Care
- The Surprisingly Complex World of e-Communities
- e-Patients as Medical Researchers
- Learning from e-Patients
- The Autonomous Patient and the Reconfiguration of Medical Knowledge
The Internet is a place, an environment,
made up of people and their myriad interactions.
It is not merely a technology but a new
way of cooperating, sharing, and caring.
-Vinton G. Cerf
CHAPTER THREE (See Summary)
Patient-Centered Networks:
Connected Communities of Care
Searching the World Wide Web for medical information represents only one aspect of the e-patient experience. For many e-patients, online interactions with their own personal networks of family members, friends and other contacts may be equally or more important.
To get a sense of your own personal online network, you need look no farther than your own e-mail inbox and outbox. According to a classification system proposed by Haythornthwaite, [1] those with whom you communicate weekly or more often are defined as your closest ties; your weekly to monthly contacts are your significant ties; and those with whom you communicate monthly or less frequently are your extended ties. In addition, you may sometimes correspond on a one-time or short-term basis with friends of friends, or others you have "met" online (a weak tie link.)
An individual's social network-"the web of social relationships that surround an individual and the characteristics of those ties" [1] has long been recognized as an important factor in maintaining health and managing disease more effectively. Online communications within personal networks are now providing several new dimensions of social, informational, and logistical support for those facing health concerns.
Internet Surrogates
In the beginning, like most health professionals and researchers, my Pew colleagues and I assumed that patients would do their searching for themselves. So we were surprised to discover that more e-patients (81 percent) had gone online because a friend or family member had been diagnosed with a new illness than had searched the Net following a new diagnosis of their own (58 percent). [1] So in August 2003, the Pew online health team began asking not only about the searches our respondents did for themselves, but also about their experiences as Internet surrogates-e-patients who turn to the Net to help others.
Internet surrogates are typically ordinary people who have stepped in to help friends or family members who are facing a medical challenge. They may be caring for a sick, aging parent or a chronically ill child, supporting a newly diagnosed friend, helping a relative deal with a chronic illness, helping a workmate or a neighbor through a physical or emotional crisis, or making a terminally ill spouse more comfortable. [1] As one patient in an online focus group explained, "I am just a mom with absolutely no special training or education in health care, but because I have been able to access resources for information online, I have been able to truly play a part in our care."
In the illustration below, reviewer Mark Bard of the Manhattan Research Group has identified several significant "zones of influence," made up of those who benefit from the efforts of Internet surrogates. [1] Because of their efforts, the online health resources the Internet offers are now available to a significantly larger proportion of our fellow citizens than we had previously realized.
Updating the numbers above with more recent Pew Internet & American Life
survey data yields the following: [1]
Active e-Patients 93.0 million
Children of e-Patients 42.5
Caregiver Impact 16.7
Spouse Impact 14.3
Total e-Patient Zone of Influence 166.5 million Americans
Women search on behalf of others more often than men do. The middle-aged do so more than the elderly. Many Internet surrogates not only search for static medical content on their friend or family member's behalf, but also exchange e-mail (or other electronic communications) with expert patients and specialist clinicians they find online. The online efforts of surrogates have direct effects on medical care. Nearly half (46 percent) of the surrogates said that their last online search affected their decisions about how to treat an illness. Thirty-nine percent said that the information they found online led them to ask their loved one's doctor different questions, and 34 percent said that online health resources had changed their overall approach to medical care. [1]
Internet surrogates often serve as the key decision makers for our sickest and most vulnerable patients. Many use the information they have found online to help make sure that their loved ones obtain the best possible clinical care, accompanying them to doctor's appointments, seeking online advice from expert patients with the same diagnosis, and consulting with medical specialists they have found via the Net. As one respondent wrote, "Being informed makes it easier for me to be of support to my family and friends in a time of need." [1]
Helping Patients and Families Deal with a New Diagnosis
When a new illness is diagnosed within a wired family, patients and caregivers reach out to their personal networks. When medical tests revealed that Ann Cochran's 13-year-old son Harris had a life-threatening arteriovenous malformation in his brain, [1] the Washington DC communications consultant immediately "put out e-mail to friends and family. E-mail became an instant support group, family reunion, and advisory board. Friends of friends, relatives of friends, and friends of relatives wrote back: 'We have friends at Mayo….' 'You have to see [Dr.] Cogen at Children's….' "We're bringing dinner over on Friday night…. What's Harry's favorite dessert?'"
"In the beginning, our online health networks may be subsets of our larger and more extensive personal online networks," says White Paper Advisor Alan Greene, a Stanford pediatrician. "If I e-mail my friend Tricia to tell her that I've just been diagnosed with hypothyroidism, she may begin by doing a Google search for me. She may give me an online introduction to the best thyroid doctor in town. Or she may e-mail her friend Suzie who has become something of an expert on this topic after receiving a similar diagnosis last year. Tricia may then report back to me with the advice and resources Suzie recommends. Or she may put me directly in touch with Suzie herself (a new weak tie link).
"Suzie may then refer me to a good online support group for this condition. She may order me a good self-care book on our shared condition from Amazon. She may offer to accompany me to my next doctor's appointment. Or she may retain the services of an online medical librarian service [1] to prepare a custom-tailored in-depth medical report providing exactly what I need to know about this disease[#_msocom_1 [JG1]] .
"Because we're mutual friends of Tricia's, and because we are now disease-mates, as well, there's frequently a surprisingly level of altruism in these relationships. So Suzie may take me on as a project, spending several hours and/or a good deal of money helping me understand what I am facing and helping me get the best possible medical care. And other members of my personal network may recommend additional resources. So my personal medical support network may grow and grow.
"People use their personal online health networks in very problem-specific ways," Greene explains. "If I broke my wrist falling off my bicycle, I'd reach out to an entirely different subset of network members than I would if I developed a nasty case of eczema. And our networks are always changing. Just yesterday, for instance, I met a pediatric gastroenterologist who would now be my number one choice as a source of online advice for anyone with a pediatric GI problem. And as the result of some negative feedback I recently received, there's another pediatric GI specialist I might have called or e-mailed yesterday who is now off my list." [1]
Patient-Centered Support Networks in Serious Illness
Many of us have been called upon to participate in the personal online health networks of friends and family members facing a serious illness. We all had sick friends in pre-Net days as well, but thanks to e-mail and other online resources, we can now become much more intimately, and helpfully, involved in their medical experiences and concerns than ever before.
Here's an e-mail message I received several years ago from my good friend Lenny Nagle, a Seattle psychotherapist: [1]
Dear Friends,
Two or three months ago, Judy began to notice some small, painful bumps on her lower right leg. They gradually grew more intensely painful, and some become infected. They were finally diagnosed as Calciphylaxis, a rare condition found only in people with kidney disease.
In this disease, the small arteries gradually become blocked by the buildup of calcium. If the blockage is extreme, the skin begins to die, exposing the tissue beneath and leaving it vulnerable to infection. If the infection or the blockage of arteries spreads to the vital organs, this condition can be fatal.
Unfortunately, Calciphylaxis is extremely rare and is poorly understood. Commonly used treatments, none of which are clearly effective, include special phosphate binders, dietary management of phosphate and calcium, hyperbaric therapy, and surgical removal of the parathyroid glands.
Judy is currently being treated with a drug that helps bind phosphate without the use of calcium (Renagel). She is on a diet low in both calcium and phosphate. She is going to St. Michael's hospital every weekday to spend two hours in a hyperbaric chamber, a room full of pure oxygen at high pressure. This forces oxygen into her affected tissues, hopefully promoting healing. It is a new treatment and has been successful in some cases, but it is still considered experimental. No decision has yet been made about removing Judy's parathyroid gland.
We are e-mailing this information because we thought you would like to know-and because it is stressful and upsetting for us to have to explain this frightening disease over and over again to all our caring family members and friends. We will send further e-mail updates to keep you up to date on the latest developments.
Love,
-Judy and Lenny Nagle
This e-mail message was sent to about a dozen close friends and family members in April 2001. Up to this point, Judy, a family therapist, had been dealing with several troubling chronic conditions, but this was the beginning of the end. Over the following sixteen months, Lenny sent out a total of 128 "Judy Updates" to a list that ultimately grew to include more than 80 names-other family members and friends, new friends, health workers they met and befriended in the course of Judy's care, and a variety of others. As the mailing list grew, its members became the Nagles' patient-centered support network-a very different entity than the better-known disease-specific online patient communities.
When I asked Lenny what his regular "Judy Updates" and the community that grew up around them had meant to him, and to Judy, he replied as follows:
It was wonderful to be able to share our struggles and triumphs with a loving, supportive group of friends who were eager to hear from us. And since our friends knew exactly what we are going through, we knew that we were not alone.
We didn't have to spend hours and hours on the phone, bringing everyone up to date. And since some of our medical experiences had been so unpleasant, it would have been upsetting to relive them over and over.[#_msocom_2 [RJB2]]
Some list members combed the Internet for information that could be helpful in managing Judy's illness, providing information, referrals, and advice. The physicians on the list sent medical information and advice. Others volunteered to drive Judy to appointments, take her out to lunch or shopping, cook her dinner, give her massages, or take me skiing or sailing. Others provided continuing emotional support, while many friends who lived nearby helped me coordinate the day-to-day details of home care, housecleaning, grocery shopping, hospital visitation, and transportation to medical appointments. Others sent flowers, candy, books, cards, and other gifts. The support we received was incredible.
During the last year of Judy's illness we weren't able to socialize much. So it was great to know that we hadn't fallen off the radar screens of our many friends with their busy lives.
Additional excerpts, completing the story, can be found at the end of this chapter.
Web Sites that Support Patient-Centered Online Health Networks
A variety of other online systems has evolved to support private online health networks for the seriously ill. Dr. Rochelle Stark was halfway through her general surgery residency at St Francis Medical Center in Trenton, NJ, when she was diagnosed with Hodgkin's Lymphoma. She now uses the services of Care Pages (http://www.carepages.com), a service provided by her local hospital, to share her journey through the long process of diagnosis and treatment with friends and family. While most Care Pages are private, Dr. Stark has volunteered to make her Care Page public, helping colleagues and other patients appreciate the importance and potentials of patient-centered networks for those facing a serious illness. The Patient Update section of her home page offers regular updates on how she is doing and feeling, while the Message Board section contains dozens of publicly accessible messages-from friends, family members, local medical colleagues, hospital and clinic staffers, as well as from many cancer patients who have found her via the Internet. A Photo Pages section is also available.
Why Personal Online Health Networks Have Received So Little Attention
We found many examples of personal networks that had become patient-centered networks. But we found very little scholarly writing on this topic. At one point, we turned to a professional online researcher at Google Answers (http://answers.google.com) for help. You can read our original question and all searches and discussion relating to those searches at:
http://answers.google.com/answers/threadview?id=474017.
At one point, our Google Answers researcher commented: "I was intrigued by your question because I have personal experience in using [this type of] online resource [myself]. Last year it became clear that my parents needed a great deal of help with some health problems… I set up a Yahoo! Group for my four siblings and me… All five of us were determined to pitch in with getting through the crisis but we all had many other obligations. [With the private group] we could pool all the information we were gathering and make it all available… so we wouldn't have to keep repeating the same information, play telephone tag, or keep track of the huge volume of e-mail we were generating. [With] all of the correspondence in one place, we could easily monitor who was doing what. We had a calendar showing all the medical appointments and posted complete lists of my parents' doctors and medications. When anyone researched a topic, they posted the results and the appropriate links... I don't know how we would have gotten through this crisis if we had to handle all the coordination by phone."
Despite this experience, he was unable to find other examples of similar use of online resources. He admitted the search was extremely frustrating. It seems likely that other families are doing something similar, but "it's just not documented."
One reason for the seeming invisibility of such networks became apparent when I asked our researcher to share some anonymized content from his family's private mailing list with our White Paper team. He responded:
As for my family support group-I'm afraid it's much too personal to share even with guarantees of anonymity. The five of us still use it whenever something comes up. We have not opened it to anyone outside our sibling circle-not even spouses or children.
Yahoo Groups currently hosts more than 12,000 different online discussion groups for "individual families". [1] These groups are accessible to members only. No studies have been done and no statistics are kept to suggest how many of these are currently being used, either exclusively or nonexclusively, to manage a loved one's illness. We wrote to a dozen groups that appeared, from the brief public group description, to include family caretaking among their functions. But none were willing to share their online care-giving processes with readers of this White Paper.
Providing Continuing Support for the Incurable
Professional medicine is often at its worst in providing continuing comfort and care for patients facing serious illnesses that are beyond the hope of cure. In such cases, the support and care patient-centered networks of family and friends provide can be a lifeline: [1]
I had a moderately bad CT scan this week for the first time in a year: One of my old liver tumors is growing again, and a new one has appeared. We're seeing my main oncologist on Friday and will decide then what the new regimen will be, but it's almost certain to be a harsher chemo. All this stuff is cumulative, so I can only say that it pretty much sucks. I'd feel a lot better if my insurance policy (which is otherwise exemplary) covered Ben & Jerry's Karamel Sutra ice cream, my major Food Group these days.
But the bigger picture is that this week marks the third anniversary of my diagnosis. I hated the first anniversary, which mostly focused my attention on all the misery involved and the endlessness of this whole slog. Now, of course, I've come around to thinking that endlessness is a pretty fine concept, and I can even celebrate these anniversaries as markers of luck and cunning, or whatever the hell it is that's been sustaining me all this time.
But the biggest reminder this anniversary brings is just what good fortune I have in the amazing web of love that has fed us, amused us, driven, listened, embraced, carpooled, and emailed. There's so much mystery in this whole deal, where this cancer comes from and how I've managed to stay alive-to flourish, even-for so long. The one thing I do know is that there's no chance I would have had such a lush life, these last three years, without my friends.
What We Can Learn from Patient-Centered Networks
In exploring online patient networks even to the limited extent possible in the course of preparing this White Paper, we felt that we were offered a valuable glimpse into Information-Age Healthcare in action. Patient-centered networks are already providing a great deal of invaluable support and care to millions of e-patients across the globe. Understanding patient networks can help clinicians understand how many contemporary e-patients are now capable of managing much more of their own medical care, of providing useful support and care for other patients, and of providing useful feedback and guidance for clinicians.
Patient networks are emerging as a new medical domain within which a wide variety of individuals and groups become valuable healthcare resources. Nearly all of those involved with patient-centered networks provide their services for free, and since patient-centered networks operate independently of the formal healthcare system, they are not constrained by that system's built-in limitations, inefficiencies, and defects. They often approach the problems they face with a striking degree of innovation and creativity.
"Our personal online health networks function as a social version of our body's immune system," Alan Greene concludes. "Different parts of it spring into action in response to a variety of different medical challenges. And without it, we would be at much greater risk of needless cost, suffering, morbidity, and mortality."
Although patient-centered networks have not been well studied, they are beginning to show up in popular culture. Cartoon strips such as Doonesbury and Funky Winkerbean have depicted characters using personal groups to inform family and friends of medical occurrences. The importance of this form of communication should not be overlooked, since individual telephone calls and emails to a person's entire network of concerned individuals puts a huge burden on the patient or the caregiver.
Lenny Nagle: Additional Excerpts from his "Judy Updates"
Judy seems quite happy most of the time. Considering what she's been through-and what lies ahead-her serenity and grace continues to amaze everyone.
I recently asked her how she keeps her spirits up. She told me that when she finds herself feeling frightened or depressed, she recites the following meditation: "May I be filled with loving kindness. May I be well. May I be peaceful and at ease. May I be happy." And after she focuses on herself for a while, she will focus on me, on our son Will, or on other family members or friends who are having a difficult time. She says this is very helpful, and usually calms her fears and fills her with a deep sense of peace.
* * *
We are beginning to prepare for Judy's death. We've both experienced lots of sadness and crying as we prepare for the time when we can no longer be together. But the same time our love seems to have an incredible tenderness and purity. The suffering we are going through is like a crucible burning off all the old power struggles and resentments-all the stuff that most couples get caught in. What's left seems pure, achingly tender, and incredibly comforting.
* * *
After conferring with our doctors, we all agreed that Judy had already stayed as long as she could manage and that it was time for her to go. I decided to bring her home to die. Two big burly gruff paramedics brought her home in an ambulance. They treated her with great delicacy and respect. The house was filled with flowers from the gardens of friends. About a dozen of her closest friends where there. Will had put up photos of Judy when she was young, strong, healthy and breathtakingly beautiful.
When we arrived home, Judy was calm, breathing easily, but deeply asleep and unable to respond, except that whenever I would kiss her, she would give me a wonderful sweet kiss back.
* * *
A little later her breathing changed into a labored rapid rhythm. It was upsetting to us all because she looked uncomfortable. Then my brother-in-law, Ben, arrived. He's an intensive care doctor who has made dying comfortable for hundreds of patients. He assured us that Judy was not uncomfortable. Her tongue was so relaxed that it was slipping back in her mouth and partially blocking the airway. Following the hospice nurse's instructions, I increased the dose on her morphine pump. Judy became more and more relaxed. She began to breathe more slowly, with a pause between breaths. The pauses grew longer and longer. Finally her breathing stopped. She looked like Michelangelo's Pieta, still as a statue, incredibly peaceful and beautiful. If there is such a thing as a good death, Judy had one.
* * *
The supportive and caring functions of the group did not end with Judy's death. The mailing list continued for more than a year thereafter, providing Lenny and the other group members with a way to explore and share their feelings about Judy's death and to provide each other with continuing support and care.
A part of me had been preparing for Judy's death ever since I fell in love with her. She'd had a serious kidney infection as a child, and when I was eighteen, a physician friend told me that her kidneys would probably fail-and she would die-in her early thirties. He was right. But by the time her kidneys failed, dialysis and transplantation were available. Yet, as she came to the brink of death time and time again, I got more and more used to the idea that the day would come when she would die and I would go on without her. But even though I knew, on some level, that my life would continue after Judy died, our hearts and lives were so closely joined, and she was such a central focus of my life, that another part felt that I could not possibly survive her.
Yet now she is gone and I am still here. And as the stress of worrying about her and caring for her illness fades, I can feel that my energy is gradually becoming available for other things. I have been watching what I eat and have losing weight. My enthusiastic nature has not yet fully reasserted itself. But I can feel it beginning to stir.
References
