e-Patients Don’t Fit Stereotypes!
If doctors think about e-patients at all, they may imagine that they are Web-savvy young or middle-aged people. Assertive baby boomers waving pages of print-outs from the Internet send shivers down some doctors’ spines.
That stereotype is rapidly becoming obsolete. Meet our friend Edith. She is a spunky delightful lady in her mid 80s. Edith is barely five feet tall. She has had to contend with some major health problems over the last several years. For one thing, she suffers from congestive heart failure and some other serious heart issues.
Despite her age, Edith is no passive patient. She likes to read as much as she can about her condition and her options. The other day she was visiting and glanced at a copy of the white paper, e-patients: how they can help us heal health care sitting on our coffee table. Her eyes lit up and she started reading.
Edith told us about an interaction with a primary care physician who told her she shouldn’t read so much. Edith fired her immediately. Edith identified herself as an e-patient and asked to borrow the white paper. We gladly lent it to her and await her feedback.
There are millions of people like Edith who are demanding to know more. Increasingly, they are older Americans with chronic health problems. They may be using their computers to email the grandchildren, but they’re also consulting Dr. Google.
Edith would have loved Tom Ferguson. Their zest for life and their commitment to democratization of information would have created an instant bond. You will find our most recent newspaper column about Tom and the white paper at: http://www.peoplespharmacy.com/archives/editorial/cancer_patients_thrive_online.asp
Health Search
Bill Tancer is the general manager of global research at Hitwise and writes a column for Time.com called “Science of Search.” His recent column on “Restless Leg, Mumps and Other Maladies” addressed the effect of media attention to certain conditions & diseases.
The column is a neat summary of a pattern we had noticed: The most common cancers are not the most common cancer search terms.
Here is a list of estimated numbers of new cases and deaths for each common cancer type:
1) Skin
2) Prostate
3) Lung
4) Breast
5) Colon
And here is a list of the top 5 cancer search terms in the Hitwise database for April:
1) Cancer
2) Breast cancer
3) Lung cancer
4) Cervical cancer
5) Skin cancer
Colon is #7 and prostate is #9. Some possible explanations: Women do more health-related searches than men. Cervical cancer was in the news because of the HPV vaccine. Any other ideas or observations from the field?
My Idea of Great: Health Data Geeks Convention
I was lucky enough to be invited to a “Data Users Conference” sponsored by the Health Information National Trends Survey/National Cancer Institute, which really should have been called Health Data Geeks Unite! If you have a moment, I highly recommend browsing through some of the presentations, particularly the following:
David Stinchcomb showed how isopleth maps can be used to smooth regional data into a lovely “weather map” connecting low belief in the risk of smoking with the reality of high lung cancer mortality rates. (If you like that kind of data mapping, check out Social Explorer.)
Jon Miller argued for the need for “biological literacy” since the 20th century was the “age of physics” and the 21st century will be the “age of biology.”
Michael Link reminded us to watch out for the effect of cellphone-only households on classic phone survey results. A snail mail survey found that 52% of cell-only respondents had been recently tested for HIV vs. 35% of landline respondents, for example. 40% of cell-only respondents are binge drinkers vs. 23% of landliners. (This was news to me since my colleagues in the political end of the Pew Research Center had found that cell-only respondents were politically akin to landliners. Watch this space for updates for the 2008 election cycle!)
Tenbroeck Smith said that the American Cancer Society call center handles about 1 million calls per year, while cancer.org handles about 20 million visitors.
My presentation focused on how e-patients are using the latest participatory media (Flickr, MySpace, YouTube, etc.) to document, advocate, educate, and illuminate their own health journeys.
Personal Health Records
Since keeping track of your own health records is part of the e-patient responsibilities described by Charlie Smith in today’s post, I thought I’d point out a study sent to me by Lorenzo Moreno, an analyst at Mathematica Policy Research.
His team conducted 3 focus groups with people living in medically underserved sections of New Brunswick, NJ, to find out what features they would like to have in a personal health record (PHR). Then they reviewed 21 existing PHRs to see how reality matches up with these consumers’ wishes. Check it out: Personal Health Records: What Do Underserved Consumers Want? (PDF)
- Susannah Fox
How Far Should Patients Go in Self Management
In the discussion of patient empowerment, it is worth considering how much care the patient should take on their own shoulders, and when they should turn to their doctor for help. Physicians often do more than would be required if the doctor and the patient was committed to maximum self management. But, on the other hand, it is entirely possible for the patient to do too much, or wait too long, before turning back to the doc for help. So, what’s the answer and where’s the ideal balance between self-care and “doctor visit” care
It seems proper for patients to take responsibility for educating themselves about their condition, carefully consider questions they would like the physician to answer, and commit themselves to an overall fitness plan. The physician should commit to monitoring their condition, obtaining appropriate laboratory and screening tests at the right time, performing periodic examination, filling and refilling medication prescriptions, and providing recommendations and suggestions about modifications to treatment approaches.
But, this is not a clearcut forumula and the best way to strike a proper balance in defiing the right roles for an empowered patient-doctor relationship is to maintain an open attititude, discuss the issues regularly, and be prepared to adjust roles over time. Some of my patients are very well qualified to do their own research, suggest changes in treatment approaches and provide helpful, regular feedback. Others do well just to understand the basics about their condition and their medications.
In the end, the answer to this question is that a relationship should be established, if possible, with your primary care physician in such a way that YOU are the manager of your condition to the extent you are comfortable and able, and the physician is a resource and a facilitator, rather than a manager/controller. Other professionals, including pharmacists, physical therapists, massage therapists, chiropractors, and others will provide care along with the physician. So, you are in the best position to be the overall coordinator of your own care.
A quick review of responsibilities you can assume when you decide to take over your own care management include:
1. Keeping your own health records
2. Researching your medical conditions online
3. Researching your medications and drug-drug interactions online.
4. Interacting online with your physician, if possible.
5. Commiting to maximizing your overall health through weight control, stress management, sleep management, and regular exercise.
6. Providing Regular feedback to your doctor.
7. Using self care tools
So, how far should you go in managing your own health. All the way to the finish line!
Dr. Tom and the E Patient Revolution
In this first post, I’d like to address the “e Patient world” and what you may expect to see develop in this area in the future. E Patients are those patients who are discovering ways to use the incredibly powerful tools and information available on the internet to empower themselves. You can think of the “e” as standing for both “electronic” and “empowerment”.
The best way to illustrate the concept of e patients is to describe my late friend, Dr. Tom Ferguson, who coined the term “e Patient” and spent most of his incredible medical career advancing the concept of patient empowerment through the use of technology. As a matter of fact, he originated this blog and I, along with several of his other friends will be responsible for keeping it going. Tom died last year after a 15 year battle with Multiple Myeloma. He not only conceptualized and wrote about e patients, but was the ultimate model himself. He lived in Austin, TX, but received his myeloma treatment at the University of Arkansas for Medical Sciences in Little Rock. He communicated with his physician here, Dr. Elias Anaissie, by e mail and by phone, and came to town only when he needed certain tests or treatments that could not be done in Austin. He was usually aware of new developments in the field before his caregivers knew about it, gently calling the advance to their attention and asking if this idea might help his condition. He was a great collaborator, constantly asking questions of physicians, caregivers and fellow patients. He strongly believed in the idea that the patient was really the only one who could be in control of, and manage their own health care, and that this should be done by a combination of gathering and monitoring their own medical data, doing research about their condition on the internet, constantly asking questions, and providing regular feedback to the professionals who care for them.
This idea has caught on and there are a number of groups that are embracing and advancing it. One of them is a group called the “E Patient Scholars Working Group” that Tom started. Several years ago, he began writing a “white paper” on this subject. The group continued the work following Tom’s death and has recently submitted the paper to the Robert Woods Johnson Foundation. My relationship with Tom during his time in Little Rock provided me the opportunity to join this group and I have learned a lot from these colleagues about advancing the cause of e patients.
You can become “e patient” by using the tools on the internet to directly interact with professionals about your health care as well as to arm you for self care and for making the most out of your visits with the doctor.
New e-Patient Reporting Tool
A new web site called “Who Is Sick” (conveniently located at www.whoissick.org) allows people to report their symptoms (cough, fever, nausea, etc.) to be logged in real time. The service tracks sickness trends down to the zip code level (aggregate reporting only!). The goal is to empower individuals to identify sickness trends long before the CDC (or CNN) has uncovered serious patterns. This could shave precious hours off the timeline in finding and stopping serious outbreaks.
On a more day-to-day basis people could find out if there was more than the normal number of people in their area with symptoms similar to their own. Now if “Who Is Sick” could only add a button for “lice infestation” so schools everywhere could anticipate outbreaks and declare “lice days” – kind of like “snow days” only not as cold!
Are E-files Spurring an E-shortage?
Gilles Frydman points us to this story from The Boston Globe today that illustrates one of the downsides to this push to electronic medical records — people who know how to use them:
The explosion of computerization in patient record-keeping means hospitals are not only competing with each other for talent, but with start-up companies that sell the computer systems off the shelf to physicians.
Next to nursing, this is probably a good career choice for guaranteed work if you’re looking toward the medical field. Having worked at Partners in Boston, though, I’d have to say that hospitals tend to move at snail’s pace in terms of adapting their legacy systems to all of this new technology. And decisions and designs are made in endless, glacier-like committee meetings, which means their outcomes are usually not ideal.
Attracting the right talent is difficult when the environment is, ahem, a little less than challenging.
Patient-Driven Content at MedShelf.org
Derek Hansen, a fellow e-health researcher, wrote to me about his latest project and it fit so perfectly that I asked him to write it up for us — thanks, Derek!
——————-
Online support groups have long been recognized as an important and unique source of medical information and social support for patients.
Unfortunately, their knowledge is often buried in email list archives or bulletin board threads, making it difficult for newcomers and outsiders to benefit. Derek Hansen, Paul Resnick, and Sean Munson at the University of Michigan’s School of Information, are trying to change that by helping online support groups create community repositories using wiki software at http://medshelf.org.
Their research has provided a few insights concerning these community
repositories:
- Providing the wiki technology is only the start. The
challenge is encouraging widespread participation and assuring that the wiki and email list play a complementary role (see http://default.medshelf.org/Project:Getting_Started for specific suggestions on how this can be done).
- Community repositories can help improve the quality of
information because, unlike archived email messages, they are continually reused and easily updated.
- They are particularly useful at aggregating information from
different community members or from different websites scattered across the web. Many useful wiki pages have been collections of annotated pointers to other resources.
- They provide the key infrastructure for new forms of
collaboration. They help communities become collaborative authors and editors of important information resources, rather than simply commentators.
If you would like to know more about MedShelf.org or are part of an online support group that would like to participate in the project, feel free to contact Derek Hansen at shakmatt@umich.edu.
Too Radical?
I have been struggling with what kind of post should go into the “found on the net” column, but finally discovered something that must certainly qualify. Granted, I’m a little late in drawing attention to it, but better late than never. About two weeks ago, one of my favored political bloggers, Glenn Greenwald, ventured into the healthcare arena and posted a short piece entitled “What is the rationale behind the prescription drug laws?” The authors premise? Why he does a competent adult need a doctor’s “permission” to obtain a medication?
I recommend the post and the comments section to anyone interested in the role of patients in healthcare. (a day pass to Salon.com is free if you’re willing to view a brief “commercial message”)
white paper
e-Patients:
How They Can Help Us Heal Healthcare
