The New York Times published an amazing array of health articles yesterday, each one of which is worthy of a discussion on this blog (and not just because we were mentioned in this one).
But I also want to take a minute to appreciate the entire online Health section of the Times, which consistently grabs my attention with its mix of articles, blogs, reference materials, and multimedia offerings. I love reading the comments appended to some of the articles and wish that more articles could turn into such forums. For example, the comments attached to You Can Find Dr. Right, With Some Effort are as useful and thought-provoking as the tips outlined in the article.
Does anyone have a favorite (or least favorite) article to point out and discuss? We can make this an open thread…
It is extremely difficult to constantly produce high-quality health information to a large public. But that is exactly what is now happening at the NY Times.
The daily interaction between the informative articles, the blog and the readers comments demonstrate the high value of deep hybrid sites such as the health section of the NY Times.
It proves that contrarily to what many are saying it is impossible to simply replace great journalistic content by User Generated Content. But what the NY Times health site shows is that you can surface great UGC, add it to high quality content generated by health communication professionals and in the process generate exceptional value. I am impressed.
Response to Tara Parker-Pope’s “You’re Sick. Now What?”
Five years ago, when many pediatric hospitals were unaware of or unwilling to acknowledge the capacities of online medical support groups, my thirteen-year-old daughter was diagnosed with a subset of a rare cancer (sarcoma or soft tissue cancer).
It was clear from the outset that California lacked the expertise for correct diagnosis, to say nothing of the specialist teams recommended for best practices. Even cursory research revealed that misdiagnosis and errors in treatment are the rule rather than the exception for sarcomas. Survival rates remain at about 50%. As ever, the AYA (adolescent and young adult) population has the highest mortality rate from cancer, in part due to sarcomas, which comprise up to 20% of pediatric cancers.
Guided by a sophisticated ACOR (Assn. of Online Cancer Resources) list whose members were at ease with PubMed, the NCI sites and more, we blasted our way from one bumbling pediatric institution to another. Our physician teams of self proclaimed “experts” practically went into cardiac arrest.
Omission after omission was revealed: failure to inform us of the margins on a cancer surgery and the significance thereof; side effects and late effects of radiation treatment; to say nothing of lost pathology reports, lost pathology samples, lost films from nuclear medicine and ON and ON and ON. This while the docs insisted on referring to me as “the mom,” dragging an already traumatized child into hair-raising appointments and dumbed down meetings, discouraging (and resentful of) outside expertise.
These pediatric oncology teams (whose institutions are highly rated in the Best Hospitals edition of US News & World Report) were appalled that a patient would research their credentials or publications, dismissive of the suggestion that they might want to list their credentials on a website. They were shocked that patients would request copies of test results and medical reports — the basic tenets of informed patient practice, to say nothing of Patient’s Rights. Their institutional practices made a mockery of “informed consent.”
The question is raised: Who is sick?
What the Times articles did not address: the capacity of e-medicine to expose medical error, rectify outdated practices — to save lives, even, and compel accountability in a healthcare system which is otherwise acknowledged to be broken.
I’m consistently impressed with the work Tara Parker-Pope is doing at The Times. I don’t know when she sleeps, but I certainly appreciate her hard work!
Though not a disinterested party, as director of the online health product at NYTimes, I agree that this is a nearly miraculous issue filled with thoughtful and superbly reported articles relevant to readers of this blog. My personal favorite, and one that I hope remains surfaced in the NYT Health Guide, is Gina Kolata’s Searching for Clarity: A Primer on Medical Studies. Understanding what constitutes “evidence,” and how randomized clinical studies differ from lab experiments and observational studies, is critical in the armamentarium of the empowered patient.
Included with the story is a fantastic ‘sidebar’graphic: How to Read a Medical Study (Skeptically) depicts with annotations the progression of peer-reviewed journal articles, from 1981 to 1996, on the once-anointed miracle cure for cancer, beta carotene.
Another interactive graphic in the section, unrelated to the primer described above, is A Look at Blood Counts and What they Mean, where clicking on a result from a Quest Diagnostics printout deciphers its meaning and links to deeper explanations in the Health Guide on, e.g., CBC, LDL, and triglycerides. These graphics demonstrate tremendous power in the convergence of journalism, artistry, and digital technology.
Christine, thanks for your comment. The e-Patients White Paper e-Patients: How they can help us heal healthcare (PDF, wiki) details many such stories, but I’m frankly disheartened to hear that yours happened as recently as 2003.
As I talk with people involved in transformation of healthcare, and I raise various issues from that paper’s research, I often hear “But we’ve already figured out how we’re going to solve that one.” Those people have surely never faced a loved one’s medical crisis and experienced the consequence of the fact that it’s not solved now. To the contrary, it’s too often rigidly entrenched, as you describe.
Conversely, people not involved in transformation often don’t want to hear the system’s got problems – understandably. (It’s like hearing your local fire department, whom you might need desperately one day, is a bunch of drunks.) In polite conversation we have a cultural taboo against saying anything like “These doctors blew it.” Doing so often sounds like a kneejerk anti-establishment rant, or like the bozo who told me in May that “Chemo doesn’t work. It’s a fraud. All you need is ionized water.” In the broad population, there is not much listening, yet, for open, transparent discussion of what works and what doesn’t.
I myself only read that paper in January, and as time went by I saw that there were several kinds of e-patient stories, and I wrote about them. Many stories tell of doctors who are helpful and supportive of participatory medicine, and many more tell of doctors who are like the ones you describe.
What people don’t realize is that today patients have access to far more power-bestowing information than we did 50-60 years ago. But even then, Dr. Spock was excoriated by many of his peers for telling mothers “you know more than you think you do.” Clearly the doctors you faced didn’t agree.
As much as I love my hospital, they made some serious mistakes in my cancer case last year. After my nephrectomy the nursing team forgot to remove my catheter on the specified day (apparently that was important), and when I came back in for a follow-up urinalysis at a critical time a few days later (to see if my remaining kidney was working ok!), the lab simply lost my specimen. I couldn’t just do another one; the moment had been lost. Yet the hospital had no process in place to make sure this potentially vital resource wouldn’t get lost.
We all need to be aware that healthcare in general is extremely (and I mean extremely) behind the times, compared to other modern enterprises. In a modern factory, things simply don’t get lost the way they do in hospitals, and the reason is simply that not enough hospitals have thought out how to prevent the loss, or done anything about it.
To be sure, lots of good work is in process. But there’s not nearly enough of it, and many facilities haven’t even begun the process, and many more don’t even agree there’s work to be done.
Then we layer on top of that the attitudes of doctors who think they’re godlike – again as detailed in many e-patient stories.
I was fortunate to encounter one of those in my 20s – a guy who took offense at my asking if I’d get a scar from the procedure. I should have run, but I figured a doctor wouldn’t be unprofessional, right? Well, he did – to remove a tiny basal cell on my nose, he decided to do a large crescent-shaped skin flap, and never did come see me to discharge me – I had to check myself out. And within a year he’d skipped town.
I’m not disfigured from it but I learned my lesson: do not tolerate professionals who think we shouldn’t be privy to our medical data, much less the chance that we might have something to contribute. But we do.
Many thanks to the Times for publicizing all the ways that patient empowerment is happening.
Thank you for your commentary. I am new to this site.
Fortunately, my daughter’s story has a good ending. She is fine, in her second year of college. The final omission: her cancer is resistant to chemotherapy and radiation therapy. The only gold standard for “cure” for sarcomas is complete surgical excision, which is why her pediatric team refused to speak of anything but local control.
She was lucky. The surgeon was skillful.
The NCI-POB (Ped. Oncology Branch)finally stepped in and convened a Tumor Board on her behalf. She is currently followed by Pediatric Specialties at UCSF, which has an excellent, Internet-adept team. Test results are sent immediately via email; there is no cruel wait period on scan days. Patients are offered copies of scans on disc as they leave Radiology.
Both the UCSF and the NCI-POB teams regard ACOR and other sophisticated e-medicine communities as a boon, not as a threat.
In retrospect, the medical judgment of her initial physician teams was good, but their communication protocols were a mess, particularly with regard to interdepartmental communication. In some respects the latter worked for us in that it was how we often discovered basic information as well as error.
BOTTOM LINE: Their teams fell apart when faced with a rare cancer. True, they were unnerved by the Internet scrutiny, but ACOR and other sites were our only means of clarifying information and commanding accountability. As with politicians, the cover-up became worse than the original error.
The best of her docs learned from the encounter. Two of her LA physicians attended the next CTOS (Connective Tissue Oncology Society) meeting and began a dialogue with nationally known adult sarcoma specialists. Her surgeon eventually left to head a department at another hospital; his credentials and those of his sarcoma team ARE listed on their website. Two oncologists were put under review. One social worker left — out of disgust, one assumes. At least one lower level employee was fired. (The “computer” dropped the contrast portion of an MRI. No one discovered error until I asked for the final report.)
ACOR and Sarcoma Alliance members launched an awareness campaign in the Los Angeles Basin area, the only major population center in the United States NOT to have a team of sarcoma specialists. UCLA, Cedars Sinai and City of Hope have moved to rectify this situation. We finally moved from logic to market competition/Internet awareness as a means of compelling social change.
Sarcoma docs all over the country are posting their credentials on websites. (This presents other challenges, but it is a starting place.)
My daughter’s case, in a small way, helped move AYA (adolescent & young adult) situation to the forefront of cancer awareness. The Sarcoma Alliance, which formerly served only adults, began to address pediatric and AYA issues. Her case helped force at least some adult and pediatric cancer specialists into better communication, which is an acknowledged problem in the field.
The older docs, in my experience, did not change.
I have great confidence in the younger generation, however, particularly the women, whom I found to be far more collegial, less interested in playing god, more able to admit and clarify uncertainties of her case.
The next obvious and infuriatingly impossible step in saving lives is to revive the 1970’s ACS campaign which featured “suspicious lumps and bumps” as a possible early warning sign of cancer.
Virtually every sarcoma story begins with discovery of a suspicious lump. The lump is then ignored by a local physician, or, as in my daughter’s case, by a series of local physicians.
“Don’t worry, mom. It’s probably just a cyst.”
“The dermatologist can’t see her for four months. We aren’t taking new patients, and the referral is for a cyst.”
By the time the patient gets to a tertiary care center, they are, for all practical purposes, dead.
The UK and Scandinavian nations have established guidelines for referral of patients with suspected rare cancers which present as suspicious lumps and bumps. Not so the U.S. The health care system is too fragmented. Physicians await cost effectiveness studies.
By definition, all pediatric cancers are rare.
In Tara Parker-Pope’s article, “You’re Sick. Now what? Knowledge is Power,” 9/30/08, NYT Science Times, she has recognized that we are now in the era of “participatory medicine.” Medical websites and e-patient blogs are becoming an important and growing source of patient and physician information exchange. This new medicine frontier has now personalized our emerging electronic health record system.
We must recognize that the Internet has made medical information management and communication, so critical to the delivery of our health care, accessible to everyone, but one must critically analyze sites to determine their credibility, including the source, author(s), timeliness…There must not be an hidden agenda to sell or promote products, procedures or even medical practitioners, at the expense of the medical information or patient safety.
The medical resources on the Internet are constantly evolving and offering a dynamic knowledge base, creating a new vision and future for medicine, patients and health professionals. In a best case scenario, patients will better understand their medical problems and ask the important questions, while physicians will have the academic information required for patient management and decision support tools.
Our time is now to make the access for reliable and academic health resources available for everyone’s health. Our obligation as medical professionals is to provide support along with the necessary guidance and interpretation.
Medical knowledge is for everyone’s health and wellness but with the clear understanding of the accompanying risks, benefits, and alternatives that are potentially available.
Harlan R. Weinberg, MD, FCCP
Diplomate, American Board of Internal Medicine, Pulmonary Disease and Critical Care Medicine
Northern Westchester Hospital, Mt. Kisco, NY
Author, “Dr. Weinberg’s Guide to the Best Health Resources on the Web,” Harper Collins, 2008
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