Is a question I ask myself almost every day. When I started this blog, it was partly a response to what I perceived an unbalanced attack on the value of breast cancer screening by the mainstream news outlets. Why it’s continued is, mainly, that I find it liberating and, in a strange way, fun. As I’m no longer practicing, this wide-open world of shared facts, some questionable, and new ideas keeps me alert and, maybe, in-touch.
But if that’s what doctors’ blogs are about, why don’t we just call it PR?
As I’ve said before, I do see value in academics blogging, especially if they’re not afraid to question, and don’t simply kiss up to authors who’ve published articles in major journals. I can see how Twitter from a trusted source like the CDC could be a rapid way to disseminate information about a new viral strain, an urgent need for blood donors, or a real public health emergency.
But for most practicing physicians, I just don’t see how they have time for it. Unless it’s like a hobby, or better – an open notebook – a way of recording your thoughts on what you’ve seen and learned in the day. That kind of blog can be great, even useful, for patients and other docs. The main thing is that the purpose of physicians’ and hospitals’ websites or blogs should be clear.
Recently I saw a tweet by @jamierauscher about whether she thinks to inform her docs about her use of social media. That’s a separate topic.
The skit depicts the interaction between a young man with a rash and his older physician. The patient is an informed kind of guy – he’s checked his own medical record on the doctor’s website, read up on rashes in the Boston Globe, checked pix on WebMD, seen an episode of Gray’s Anatomy about a rash and, most inventively, checked i-Diagnose, a hypothetical app (I hope) that led him to the conclusion that he might have epidermal necrosis.
Not to worry, the patient informs Dr. Matthews, who meanwhile has been trying to examine him (“say aaahhh” and more), he’s eligible for an experimental protocol. After some back-and-forth in which the doctor, who’s been quite courteous until this point – calling the patient “Mr. Horcher,” for example and not admonishing the patient who’s got so many ideas of his own, the doctor says that the patient may be exacerbating the condition by scratching it, and questions the wisdom of taking an experimental treatment for a rash.
“I just need you to sign this paper,” says the patient.
The doctor-puppet pauses momentarily, seemingly resigned to a new role. After the patient leaves, the doctor thinks to weigh himself. The skit ends with the sounds of keyboard typing.
The piece supplies thought-provoking details in under 2½ minutes. It’s a useful teaching tool, among other things. There’s been some discussion about it on the NPR site, the Patient Empowered Blog, the Health Care Blog and elsewhere. Some comments suggest annoyance, that the “informed patient” is misrepresented here as exaggerated or foolish, or that the skit is off-mark.
To me it rings true, representing an older doctor who’s trying, open-mindedly but not at the cutting edge, to embrace new technology, and has the patient’s interests at heart. His efforts and his knowledge are set aside.
My reaction is sadness. Am I the only one?
Thanks to the team who created this insightful production: produced by Gregory Warner and Mara Zepeda. Created by Sebastienne Mundheim of White Box Theatre, acted by Charles DelMarcelle and Doug Greene, and voiced by two actors from Philadelphia’s Pig Iron Theatre Company, and to NPR’s Marketplace for presenting.
@gfry: Participatory Medicine evangelists say “Engaged, empowered patients are better, healthier patients.” Where is the evidence?
What makes this question so ripe, in my oncologist-patient-teacher-blogger’s way of thinking, is that we may never, even if formal studies do provide data on this issue 10 years ahead, reach an objective conclusion on this matter.
The problem is this: To prove that empowered patients are “better and healthier,” how would we design a trial? If we were to compare those engaged – who almost by definition are more educated or at least have Internet access, or who are one way or another are linked to people who can help them find needed information – they’d likely do better than the disconnected patients. But the outcome might be a function of confounding variables: their education, economic status, on-line connectivity, etc.
I think the answer is inherent in the goal of being engaged, and this has to do with the concept of patient autonomy – what’s essentially the capacity of a person to live and make decisions according to one’s own set of knowledge, goals and values.
Autonomy in medicine, which borders on the empowerment idea, can be an aim in itself, and therefore valuable regardless of any measured outcome. For autonomy, or patient empowerment, to be meaningful and maybe even “better” in the strictly medical sense, as measured by outcomes like survival or quality of life, there needs be stronger public education in the U.S. and everywhere.
You can read all you want on stem cells, gene therapy or rare forms of chronic leukemia that are driven by a turned-on oncogene, but if you don’t know the basics of science and math, or don’t have sufficient language skills to read and absorb new knowledge or at least ask pertinent questions, it’s easy to get lost in that information, overwhelmed or – worse – suckered by those who’d try to persuade you of something that’s not true, cloaked in pseudoscience, that’s abundant and available on-line and, occasionally, in some doctors’ offices.
Earlier this week I had the opportunity to host med-blog Grand Rounds. This honor – or assignment, depending on your perspective – came just in time for the new academic year.
(That would be today, July 10, 2010 – welcome new students! and interns! and “mature” doctors without supervision!)
Coincidentally, or not, over the past year I’ve made it my business to study what some might call on-line medicine. Since completing my J-School (that would be J for journalism, just to be clear) degree, I’ve spent much of my time reading, clicking and otherwise navigating through the medical blogosphere and greater Web.
So far I’ve tried to examine what’s out there – websites, on-line newspapers, magazines, blogs, advertisements, academic medical journals, Twitter, videos and more – as best I can, to understand how people find and share information having to do with health. What I’ve learned, largely confirming what I thought previously, is that the Internet as a source of medical information is a complex, evolving, powerful and largely unregulated instrument.
Some key questions for the future:
1. What is a blog and how might that be distinguished from, say, a website with ads and text, or from a newspaper or multimedia conglomerate with an engaging on-line section?
2. How might a reader identify a medical blog or health-related website? Is there a reason to separate these kinds of Internet domains from those concentrating on wellness, health care delivery, science, ethics or policy issues?
3. How much value, if any, should we assign to articles for which the author is unknown?
4. The issue of conflict of interest (COI) is slowly working its way into academic medical journals and continuing medical education programs for physicians. But on-line there’s essentially no regulation and it would be hard to implement any disclosure requirements even if there were. How the public might be informed of COI regarding on-line content – whether that’s provided by individual bloggers, newspaper-employed journalists, med-tech companies or pharmaceutical corporations – seems a critical issue for the future.
Learning about medicine is a lifelong endeavor whether you’re a patient, a doctor, a caregiver, a hospital administrator or, perhaps, even an insurance company executive. In today’s Grand Rounds, we’ve an array of eleven perspectives that, directly or indirectly, bear on the suggested theme of education.
If there’s a motif that emerged unsolicited this week, it’s empathy, a term highlighted in the titles of two submitted posts:
In Glass Hospital, Dr. John Schumann considers what motivates health care workers in a thoughtful post, Finding Empathy. Schumann, an internist and medical educator at the University of Chicago, suggests that doctors and nurses need to re-encounter and re-engage with empathy to continually find meaning in their work.
Near empathy lies the concept of interpersonal connectedness. In that vein, several of this week’s essays consider the essential and sometimes close (or not-so-close) relationships that form between patients and their doctors, between physician-educators and doctors-in-training, and between scientists who study particular disorders and the public that depends on their work:
Dr. Kimberly Manning is a medical educator at Atlanta’s Grady Memorial Hospital. In theACP Hospitalist she considers the transience of some relationships, and permanence of others, formed between faculty and junior doctors passing through that public hospital’s residency training program. Her post, “Life at Grady: A clinician-educator reflects” included some lovely verse. After reading those lines, I couldn’t resist trying to find out more on Aleksandra Lachut, a poet previously unfamiliar to me.
In his wrenching Medicine vs. Religion: My Brother’s Keeper Revisited, Dr. Alan Dappen considers the predicament of a severely anemic woman who refused treatment for many years based on her firmly-held religious views. Drawing on his own, personal experiences with a brother whose faith-based ideals led him to decline care, Dr. Dappen persuaded the patient to accept medical help. This and related posts by can be found on Better Health.
Going further in a pragmatic direction, Louise Norris advises patients and doctors to “think twice” before CT scans in her post Radiation Exposure from Medical Testing. She and her husband own Insurance Shoppers Inc., provider of the Colorado Health Insurance Insider blog. Of interest, Norris advocates a radiation medical record that would track a patient’s total exposure to imaging radiation over a lifetime. Health insurance companies could help patients, she suggests, by reducing their risk through the approval review process for imaging studies. “If an ultrasound could be used instead of an x-ray, or an x-ray instead of a CT scan, we could be saving money as well as preventing future cancers,” she writes.
My favorite title of the week comes from InsureBlog‘s Bob Vineyard, CLU (that’s Chartered Life Underwriter, just in case you’re wondering as I was). In his Mission Accomplished! post, Vineyard rails on the consequences of Romneycare including a primary care physician shortage. One lesson from the Massachusetts experience is that there will be an even greater demand for primary care physicians under Obamacare. As he sees it, the question for today’s aspiring physicians is whether or not to take advantage of that opportunity.
Finally, and coming full circle, the ACP Internist submitted a post authored by none other than Glass Hospital’s Dr. Schumann. This one’s called Cholesterol: validation of the self. Here, he questions the merit of an established and perhaps over-valued concept in medicine, that of lowering cholesterol.
It seems to me, the notion of challenging old assumptions is a terrific lesson with which to end any catalog of essays on education.
Lots to think about –
Many thanks to all who contributed to this week’s Grand Rounds!
Last week, ABC announced drastic cuts for its newsroom staff. The situation is similar at CBS, which in early February reduced its news-gathering personnel. These pull-backs by the major networks, paralleled by lessening or flat-out elimination of newspapers, will boost the number of people who check the Internet for medical news.
Two recent studies, from the Pew Center’s Internet & American Life Project and the CDC’s National Center for Health Statistics, confirm that most Americans are going on-line for health information. Compounding this effect, in all likelihood, are the uninsured, those reluctant to fork out hefty co-pays and some who are unable to dole out a deductible before they see a doctor.
Bottom line: the role of Internet-based health resources is likely to expand over the next decade. We need to know what’s out there -
We should start with MedlinePlus, a virtual superstore of free medical information. Co-sponsored by the National Library of Medicine (NLM) and the National Institutes of Health (NIH), this site is comprehensive and relatively clear of commercial bias. (There are significant exceptions, see below). It’s a useful origin for most any health-related search.
MedlinePlus covers more than 800 topics in English, 500 in Spanish and selective information in over 45 languages – you can read about anemia in Bosnian, hand hygiene in Creole or viral hepatitis in the Hmong language.
The site includes a medical dictionary, an encyclopedia (provided by A.D.A.M., a health education company that’s traded on the NASDAQ, ADAM), a compendium of drugs, supplements and herbs (put forth by the American Society of Health-System Pharmacists), a database on herbal remedies from Natural Standard, and some 165 interactive health tutorials.
There’s a direct link to the original on-line database that doctors used for decades, Medline/PubMed. This professional reference encompasses over 16 million articles published in more than 5000 scientific and medical journals. For the most part it’s a well-organized list of titles and abstracts, or summaries, of biomedical papers. A growing proportion of the articles are available in their entirety, and the abstracts can sometimes provide helpful clues in a medical search.
Another key connection is to ClinicalTrials.gov, an NIH-sponsored registry of all federally-sponsored and many privately-funded clinical trials conducted in the United States and elsewhere. For cancer patients, this database is crucial; previously, only doctors searching for clinical trials could access a public database of experimental treatments. (I’ll cover this site in a separate, future post.)
MedlinePlus offers an extensive catalogue of surgical procedure videos. You can watch an abdominal hysterectomy, vasectomy reversal or open heart surgery if you choose. While the films can be helpful, perhaps, to some patients who are deliberating about a procedure, some of my non-physician friends have found them rather bloody. I have some reservations about this component of the MedlinePlus site, in that many of the videos are provided by community medical centers and, the films are provided by a commercial enterprise, ORlive.
In recent years the number of visitors to MedlinePlus has hovered over 10 million per month. In 2009, the site received hits from approximately 128 million distinct Web addresses.
Last year, I spoke with Robert Logan, Ph.D., of the Office of Communications at the National Library of Medicine. “We’ve hit some sort of tipping point,” he said. “The internet has eclipsed other health information sources.”
Despite the comprehensiveness of MedlinePlus, there’s work to be done, said Logan. Some particular areas he hopes to improve on include ethics, epidemiology and statistics. “It’s hard for people to look at numbers and make clinical decisions,” he said. “But that’s a serious weakness in all areas of medicine all over the world.”
Ten years ago, my colleagues and I squirmed in our swivel chairs when a few tech-savvy patients filed in bearing reams of articles they’d discovered, downloaded and printed for our perusal. Some of us accepted these informational “gifts” warily, half-curious about what was out there and half-loathing the prospect of more reading. Quite a few complained about the changing informational dynamic between patients and their physicians, threatened by a perceived and perhaps real loss of control.
How a decade can make a difference.
In 2000 the Pew Charitable Trusts initiated the “Internet & American Life Project” to explore how the Web affects families and communities in matters of daily life. Susannah Fox is an associate director of the Research Center project.
“It’s the ultimate information appliance” she says of the Internet. Now that it’s in most people’s homes, people use it as they choose.
And that’s quite often -
In 2008 over 140 million Americans, a majority of U.S. adults, looked for health information on-line, according to the Center’s 2009 report. Nearly 60 percent of those admit that a recent Internet search influenced a medical decision.
“Back in 2000, our data was used to prove the concept that people were going on-line to get heath care information,” she says. But that’s no longer the issue.
“With Facebook, MySpace and Twitter, there’s a new frontier” she states. “I think we’re at a new inflection point, and now is the time to have a very clear conversation on health care.
There’s been a significant shift on the physicians’ side, too.
“It’s become clear that increased communication and discussion can change care in a positive way” says Dr. Barron Lerner, a primary care physician and medical historian at Columbia University. His most recent book, When Illness Goes Public: Celebrity Patients and How We Look at Medicine, considers how ailments in the public realm can influence peoples’ perception of illness and inform their care choices.
“The Internet can be amazingly good to get people up and running” he considers. Lerner encourages his patients who have cancer to visit the National Cancer Institute (NCI) website.
“Why not go on, and explore,” he tells them. “Now as for how much they can absorb there, I don’t know,” he adds. “It’s a very hard website.”
Dr. Gretchen Berland is a primary care physician, videographer and former MacArthur Foundation fellow at the Yale University School of Medicine. She led an early study on the quality and accessibility of web-based medical information in that was published in the Journal of the American Medical Association in 2001.
“The Internet gives people a sense of control,” she says. “People use the Web to augment the information they’re given by their physicians, to look for a second opinion, and to search for clinical trials.”
But despite the wealth of information, and good quality of many sites, Berland sees limits in the Internet’s use, particularly for patients with complex, serious conditions like cancer. Even if online materials are comprehensive and accurate, they rely on people’s ability to find and understand them.
The Internet is not enough to help most people, she states.
Recently Berland searched on-line resources on behalf of a friend who had cancer surgery. When she looked at all the data, including material gleaned from some physician-oriented sites, there were gaps. “It wasn’t clear what he should do, despite how much information is out there.”
That’s the paradox of the Internet, she notes. “It’s hard to know what applies to a particular person’s unique and complex medical circumstances.
“One thing the Web doesn’t do is personalize the information,” she says. “That’s what physicians do.”
Some of you may have noticed I’ve been quiet for a few days. That’s because I’ve been working on the elements of my new Medical Lessons site. Among the things I’ve learned since starting this project in mid-November, just 2.5 months ago, is this -
Blogging is like practicing medicine in some surprising ways:
1. You learn how to blog by doing it;
2. What you say, and how you say it, makes all the difference;
3. Some people will appreciate your style, others won’t;
4. You have to be careful, details can make things go right or wrong;
5. There’s never enough time in the day;
6. It’s fun, interesting and rewarding (largely in intangible ways);
7. You have to stay current to be good at it;
8. You get to interact with all sorts of people;
9. You’re constantly learning;
10. I love it.
As soon as the new site is ready, you’ll find the directions automatically.
Not to worry – I’ll be writing lots, then and there. Once the formatting’s done I’ll have more time to spend on ideas and information.
Yesterday, Dr. Pauline Chen reported in the New York Times on virtual visits, a little-used approach for providing care to patients hundreds or thousands of miles apart from their physicians.
Telemedicine depends on satellite technology and data transfer. It’s a theoretical and possibly real health benefit of the World Wide Web, that giant, not-new-anymore health resource that’s transforming medicine in more ways than we know. Chen writes:
Telemedicine has the potential to improve quality of care by allowing clinicians in one “control center” to monitor, consult and even care for and perform procedures on patients in multiple locations. A rural primary care practitioner who sees a patient with a rare skin lesion, for example, can get expert consultation from a dermatologist at a center hundreds of miles away. A hospital unable to staff its intensive care unit with a single critical care specialist can have several experts monitoring their patients remotely 24 hours a day.
I’m reminded of three things:
First, my recent visit to my internist’s office on East 72nd Street, a short walk from my home. When I see my doctor she smiles warmly, shakes my hand firmly and examines me from head to toe. She takes my blood pressure with an old-fashioned sphygmomanometer, looks at my eyes and into my throat, applies a stethoscope to my scarred chest as she listens to my heart and lungs, and palpates – “feels” in doctorspeak – my lymph nodes, liver and spleen. All that along with a neurological exam; she sees how I stand, walk and balance my head over my torso.
Second, my husband’s conversation with his mom yesterday evening, via Skype, transmitted between his laptop in our living room and her computer in a Buenos Aires apartment.
Third, some history from the 1950s – on how early computer scientists envisioned the future of medicine. From my master’s thesis at Columbia University’s Graduate School of Journalism, on how the “How the Internet is Changing the Practice of Oncology”:
When Vladimir Kozmich Zworykin addressed the 1956 assembly on “Electrical Techniques in Medicine and Biology,” he marveled at the technological feats of computers, and envisioned how these new instruments might be applied in health care. Zworykin, an inventor of television …was privy to the newest developments in applied science.
…He’d seen closed-circuit “Telecolor Clinics” that transmitted the latest cancer research news to physicians in cities along the eastern Seaboard and Great Lakes Region. A color, television microscope linking monitors in Philadelphia, Washington and Baltimore enabled doctors in one city to identify cancer in another…
We’re back in the future! My take on telemedicine includes three components; each corresponds to one association above.
1. Telemedicine is not the same as real medicine. I like seeing my doctor in real life and am reassured by her true presence in the room.
Besides, a hands-on exam has some tangible benefits. A good doctor, who knows how breathing sounds should sound, confident in her examination skills, might skip an x-ray she’d otherwise order. A competent hematologist, skilled in palpating her patients’ lymph nodes, liver and spleen, could spare us the costs and risks of some CT scans and MRIs.
Of course, the doctor’s hands should be clean… (a topic unto itself)
2. Virtual visits might help. The reality of medicine requires innovation and compromise – making the best of a sometimes difficult situation.
As Pauline Chen points out in her column, there’s a shortage of doctors affecting some, particularly rural, parts of the U.S. Policy experts anticipate the problem won’t go away with current health care reform measures, and some business reports warn the situation will get worse. Telemedicine, while not ideal, might ameliorate this effect and make a positive difference in the health of people living far from major medical centers. The technology could, indeed, connect patients with specialists who would otherwise be out of reach.
3. The future of medicine will embrace some elements of telemedicine. We just need to fine-tune the process.
As I see it, Internet or satellite-directed medical examinations are most promising for image and data-centric fields like radiology and pathology. It’s telling that Pauline Chen’s first example pertains to dermatology (skin diseases). Sure, I think a far-away expert’s view of a skin lesion could be helpful – it might reassure some that a mole or a rash is nothing to worry about, or inform them that indeed, they should hop on a train to Memphis. For patients with benign-appearing lesions, telemedicine could save costs and time in travel and unnecessary appointments, besides biopsies.
But I’m wary of implementing this tool in primary care areas and interventional fields like surgery and obstetrics. The prospect of delivering babies upon real-time instruction by doctors in cities far away is not what I’m hoping for, at least not for my kids’ kids.
Here’s my short list, culled from newsworthy developments that might improve health, reduce costs of care and better patients’ lives between now and 2020, starting this year:
1. “Real” Alternative Medicine. By this I don’t mean infinitely-diluted homeopathic solutions sold in fancy bottles at high prices, but real remedies extracted from nature and sometimes ancient practices.
2. Chemotherapy Pills. Why get treatment through an intravenous catheter if you can pop some pills instead? To be clear, some of the best and most effective cancer therapies require infusion. And just because a medication can be taken by mouth doesn’t mean the side effects are trivial.
But quite a few targeted therapies, like Gleevec or Tarceva, besides some old-fashioned drugs like Leukeran and new forms of old agents, like Xeloda, work just fine in pill or capsule form. Many patients, especially those with limited life expectancies, would gladly choose an oral combination therapy, the sort of medication cocktail taken by AIDS patients only for cancer, instead.
A gradual shift from intravenous to oral therapies for cancer would transform the practice, and economics, of oncology as it’s practiced in North America.
3. Environmental Hazards. Where we live, what we carry and ingest surely affect our bodies and our cells. We’ve learned about Bisphenol A (BPA), an estrogen-like molecule that leaches from plastic food containers into the foods we eat.
Now, we should expect and demand more information on what’s really in the water, so to speak. And in our sunscreens, and in so many chemicals we use routinely and without hesitation.
4. Health Informatics. The Pew Research Center reports that two thirds of American adults are going on-line for health information.
But that’s only part of the story. Sure, the internet makes it easier for people to learn about medical conditions, but the same applies to physicians. In principle, the internet should help doctors stay current, make sound decisions and provide better care.
Electronic health records (EHRs) will, in the long run, reduce costs from duplicate testing, faxing and re-faxing of reports and, more importantly, lessen errors from illegible or incomplete medical files that are too-often inaccessible. Over the next decade, we’ll see how patients find value in their own records (or don’t), how privacy issues play out, and if electronic documentation of millions of health reports provides, in itself, new information on disease trends and treatment effects.
For a cancer patient undergoing therapy, the current standard involves multiple scans at intervals of months or even weeks, to see how a tumor is responding, or not, to a particular treatment regimen. Once in remission, some people undergo additional periodic studies just to be sure there’s no evidence for the tumor’s recurrence.
The news is that easier, more accurate and less dangerous methods for monitoring tumors are forthcoming. Using microchip-based detectors doctors can, using just a few drops of blood, measure the extent of a colon or lung cancer and examine how tumor cell genetics change during treatment. Over time, this and similar technologies will improve and, with standardization in manufacturing, come down in price.
6. Palliative Care. Not everyone wants to spend the last days of his or her life in an ICU hooked up to a ventilator with tubes and intravenous lines. But few people prepare for the end of life when it happens in a hospital, and doctors don’t generally talk about it in advance.
Palliative care, the kind of medicine aimed at treating symptoms, rather than achieving cure, is underused in the United States. Over the next decade, we should see better education of doctors in this essential field in cancer medicine, and of the public, too.
7. Cancer Vaccines. These work by immunizing a person against a tumor just as one might, instead, inoculate a person with a modified virus or bacterium to stave off infection.
Cancer vaccines would stimulate and harness the body’s normal immune cells to confront and eradicate cancer cells. This year, the FDA will take another look at Provenge, a vaccine that’s designed to treat men with prostate cancer. Similar biological agents are in the works for most other tumor types.
We’ll be hearing more on these innovative drugs that, so far in clinical trials, appear to have few side effects. Whether the vaccines are effective – if they can shrink tumors – we’ll have to wait and see.