No wonder we feel squeezed. (Yesterday’s announcement comes on top of this history.)

This has enormous human impact. SPM advocate/painter Regina Holliday’s husband died partially because of inability to get care. My own life-saving visit was delayed until I had insurance. This month’s news is that 15% of Americans (45 million!) are in poverty, and this week a tweet from some conference said sixty million Americans are now uninsured.

Who will be able to stop this? As Al Mulley said at TEDx Dartmouth, who can fix healthcare?

Mulley says it’s up to us.

The SPM members’ listserv

This summer on our members-only listserv a hot discussion took place about whether healthcare is headed in the right direction. We noted that managers and policy people often arrive at policies and decisions without consulting the people who ultimately suffer or benefit from the wisdom of those acts: the patients. (And, often, the clinicians trying to accomplish care.)

I flipped back to May, when, as we noted here, SPM member Jessie Gruman’s Center for Advancing Health published its Engagement Behavior Framework. (See PDFs at bottom of that post.) Her team methodically identified 43 engagement behaviors: ways every patient will engage with the system, eventually, or have someone do it for them. CFAH groups them into ten categories:

1. Find Safe, Decent Care
2. Communicate with Health Care Professionals
3. Organize Health Care
4. Pay for Health Care
5. Make Good Treatment Decisions
6. Participate in Treatment
7. Promote Health
8. Get Preventive Health Care
9. Plan for the End of Life
10. Seek Health Knowledge

All good and relevant – but what about making sure the system itself is what we want??

I thought, perhaps there’s an 11th category of patient engagement:

11. Design and create a safe, decent, patient centered healthcare system.

That’s participatory not just in care, but at the level of management, culture, and responsibility for care. Our definition shifts to:

Networked patients shift from being mere passengers to active drivers of their care system, and providers and leaders encourage and value them as full partners.

It would bring SDM (shared decision making) to a new level, way beyond the individual care episode. Patients and clinicians would start to define what care is.

And that just might alter our focus, as we make tough decisions about care in the era of unaffordability.

You may have been taking a well-deserved vacation from the news on July 4^th, when The New York Times published an op-ed that briefly described a solution to this problem that takes a giant step toward clarity developed by Steven Woloshin and Lisa Schwartz at Dartmouth.

Now you have an opportunity to watch Woloshin expand on this solution in a 20-minute talk delivered at the meeting in the Evidence 2010 meeting sponsored by BMJ in the UK last year.  In this clip, he provides a quick romp through the history of drug labeling, describes why certain information is important to us and proposes a model for how that information might be presented to support our decisions about prescription medication.

I spend quite a bit of time writing up survey data, working with moderately large respondent pools (N=2,253 is the number of people who completed my last health survey; N=609 is the number within that sample who are living with high blood pressure, etc.)

This morning I decided to listen to Patient Voices: Scleroderma as I crunched some data (N=269 – people with lung conditions; N=193 – people with heart conditions…).  What struck me, as I listened, is that there is something powerful & human about listening to patients tell their stories. So many people are living N=1. Not just because they have a rare condition, not just because they’ve been told their case is unique, but because they simply are individuals going through life, and health is just one aspect of who they are.

Joe and Terry exemplify the participatory medicine movement. He’s a pharmacologist, and she’s a PhD medical anthropologist, studying what people do in a given culture (in this case, ours). Our founder “Doc Tom” Ferguson lists them as his advisors in his White Paper’s acknowledgements.

Theirs is a story of conversion based on undeniable evidence gained by listening to patients:

“We were the country’s leading generic enthusiasts,” he told me recently. But over the last eight or nine years, Mr. Graedon began hearing about “misadventures” from people who read his syndicated newspaper column, also called The People’s Pharmacy.

The stories were typically from patients who were switched from a brand name drug to a generic one and had side effects or found that their symptoms returned…

The Times article spells out the issue: to the FDA, a generic is the same if it has “the same active ingredient, strength and dosage form.” But the citizens on the People’s Pharmacy discussion forums report that’s not true for them – and new research the Graedons sponsored shows that another variable, the release rate, varies. The body might well respond differently if the drug arrives in the cells at a different rate, but the FDA doesn’t look at that. People’s Pharmacy convinced ConsumerLab.com to do that research.

E-patients who want to take responsibility for their own care need to wise up and speak up. In many ways the FDA’s processes prevent junk from entering stores, but it’s a mistake to expect perfection.

Listen to your body. If your insurance company switches you to a generic, pay attention to your response. Or even if it doesn’t! If your response to a medication changes, tell your medical advisors.

…a quick scan through peer-reviewed journals reveals only a handful of articles, and no evidence-based guidelines, to guide doctors on the use of social media. It is unclear whether such engagement adds to or detracts from a therapeutic patient-doctor relationship, and clinicians are unsure about what constitutes good standards of care and professional responsibility on these platforms.

More physicians and hospital are using, or thinking about using, social media, such as Dr. Sean Khozin of Hello Health, a system that mixes office and online visits. He’s quoted in the Times article as saying “there are so many layers of bureaucracy between health care providers and patients.”

We can use social media to coordinate care with patients and with different specialists, all using the same platform. I can monitor my patients, and they can also use these tools to become empowered through a better understanding of their own disease state and active engagement.

Our own Danny Sands is quoted on the down side of social media for patient communication. “Maybe letting your patient get too close isn’t always good for the therapeutic relationship,” he says, and he goes on to note that busy physicians are not eager to add the new time commitments social media would entail without a clearer idea of the value. The highest-value healthcare application of social media may be in supporting patient communities, where, Sands says, “we can aggregate across space and across the world and create a safe environment for support.” He calls referral to a patient community like the Association of Cancer Online Resources an “information prescription.”

There were 350 males and 165 females in their sample and the median age was 35 (plus or minus 8 years). I’d hazard a guess that they are all college educated.  So one’s antennae might go up just on those grounds since that’s not even close to a representative sample of the current internet population.

But right away I was drawn in by their methods and their research questions. I think it’s a fantastic idea to harness the power of log files to investigate what people are actually doing online. That’s why I’m a big fan of Bill Tancer of Hitwise, who once told me that they have to remove all data related to porn from their data set in order to see anything else. “Adult” searches just swamp the rest of what’s happening online, apparently. That’s the beauty of log files over phone surveys: we can only get 15% of adults to tell our interviewers that they have visited adult websites.

But that’s also where my antennae went up again — the researchers use the word “may” a bit too often for me to feel comfortable with all of their assertions related to their very cool data set. For example:

Identifying the recurrence of concerns about a rare disorder — especially when the recurrence occurs during another search task — may indicate that earlier escalations extend over time, and that anxieties or heightened awareness continue to interrupt users’ online activities over prolonged time periods. Such findings may be proxies for the rise and persistence of deep concerns that may disrupt other aspects of daily life.

Or they may not!

John Markoff’s November 24 article in the New York Times, however, helped me put my finger on why I thought I’d heard something like this before: “Medical Web Searches and Escalating Fears: Microsoft Finds Top Results Lead to Anxiety.” Markoff described Eric Horvitz as an artificial intelligence researcher (bing! a bell goes off in my head) and concludes with the following:

In the 1990s, Microsoft researchers built a health advisory system for pregnancy and child care. Mr. Horvitz said that in the future it would be possible to create search engines that were able to detect medical queries and offer advice that did not automatically make Web searchers fear the worst.

Bing! Bing! Bing! Now I know where I have heard something like that before: Diana Forsythe in her classic article, “Old Wine in New Bottles,” described how artificial intelligence researchers, when designing a migraine information kiosk (yes, it was the 80s), didn’t ask patients what they wanted to know. They asked one doctor what he thought patients should know about their condition.  And guess what? He didn’t include the answer to the number one question asked by migraine sufferers:  Am I going to die from this?

No, the migraine patients weren’t going to die from the pain, but isn’t it their right to ask the question? In asking it, does it mean they want to “escalate” their anxieties? Who should be the trusted guide? Is it Microsoft?

I hope the conversation about this study continues since I am intrigued by the questions it raises.  And here I’ll give the last word to John Naughton, a columnist for The Observer:

The moral? If you’re a hypochondriac, stay off the web. And remember that, as the man said, the best cure for your condition is to forget about your body and become interested in somebody else’s.

I think more than 15% of American adults would agree.

Patients need to understand this, because physicians sure as Hades aren’t going to tell you.

Kolata uses sports injuries as examples. With suspected cancers, the stakes are life and death.

One of the first physicians to almost get my teenage daughter killed was the well-intentioned local radiologist who assured us that the odd lump on her left forearm was “probably not” cancer, although he could not specify exactly what it was.  Due to location of the tumor (near the ulnar nerve), the radiologist recommended that we NOT have the bump removed. “Don’t worry, mom….”

Based on the radiology report, the dermatologist likewise recommended that we NOT have the lump removed unless we had access to an expert surgeon (which we did not, or thought we did not), so he simply dropped the ball on the referral.  He just quit.

My daughter finally insisted that it be removed because it was not behaving like a cyst — this despite the orthopedist at the county hospital having brushed aside her concerns, his near warp-speed exam preceded by a several hour wait in the waiting room.  (There is nothing quite like a 30:1 wait:exam time ratio to convince you that you are indeed an idiot, wasting the doctor’s time, overreacting to a minor medical anomaly.)

Then came the dreaded “Whoops!” scenario so familiar to sarcoma patients — an excisional biopsy done without benefit of prior testing. This would be akin to a surgeon removing a lump from a woman’s breast without benefit of a needle biopsy. The tumor is cut open, with no margins. (See Fritz C. Eilber, MD, and Frederick R. Eilber, MD, “Surgical Management of Soft Tissue Tumors: Avoiding the Pitfalls.” American Society of Clinical Oncology 2005:940-942).

The lump was a malignant peripheral nerve sheath tumor (mpnst), a sarcoma or soft tissue cancer.

Fortunately, the orthopedic surgeon who removed the lump — after assuring me with a smile, “Don’t worry, mom. How long has this been here?” — was an expert (albeit at sports injuries, not orthopedic oncology) and a good guy.  He did not disappear after the “Whoops!”  Instead, he spoke with Dr. Sharon Weiss at Emory University Medical School,  acknowledging that he had been unaware that sarcomas could sit for a decade or more, indolent (looking like cysts) before they took off. And the tumor, almost imperceptibly, had begun to take off.  Instead, he called around the country to help us find the right medical specialists.

After weeks of agonizing debate, her team settled on a conservative re-excision, sparing the nerve, insuring quality of life,  putting her life at higher risk.

Whither the MRI?

The initial MRI was the only baseline image which her oncology team had to grade the tumor before it had been cut open.  Besides tissue analysis, grade of tumor is determined by size, depth and firmness of the mass. Grade determines treatment, meaning that my left handed child, an accomplished violinist, might never use her hand again should the next surgeon decide to cut.

A physician at a university medical center finally explained that the films were junk. Useless due to poor quality. A joke, almost.

Although the radiology departments at two widely respected children’s hospitals were good, the radiology department at UCSF was excellent. So excellent, their more comprehensive scans revealed cysts on her palm, meaning possible (but not probable) local metastasis.

Thus began a new nightmare.  A needle biopsy risked permanent damage. The UCSF radiologists were indeed experts, but by then we were afraid to trust anyone (a common side effect of sarcomas). Nonetheless, we decided not to hunt that particular dog — AFTER ascertaining from an experienced ACOR list member (a physician) that UCSF indeed had an excellent radiology department.

There are several lessons to be learned.

First, as Kolata points out, there are vast differences in the quality of MRIs as well as vast differences in expertise of the radiologists who interpret them.  The MRI is the key element in the referral and decision making process.

Second, there is no substitute for research and patient proactivity. None. Nor, given the fractured state of health care in the United States and the flailing economy, is there any substitute for e-medicine for cancer cases in terms of speed, research capability and candor.

Third, organizations like the American Cancer Society and the Lance Armstrong Fund need to take the lead in getting the word out about klutzy MRI’s. This is unconscionable.

As a further insight, the wife of my daughter’s high school biology tutor, head pharmacist at a local hospital, informed us that in decades past that my daughter’s case would have automatically been referred to a major university medical center. Now, given local oncology facilities, insurance companies force the patient to beat his or her way through the local medical scene, making referrals to genuine centers of expertise for ordinary people difficult if not near impossible.

The locals may be fine for diagnosis and treatment of the Big Four cancers, but they ain’t fine for pediatric cancers and/or rare cancers which present as suspicious lumps and bumps. For this, they can be fatal.

It would be different if physicians were to openly admit the limits of their expertise, but that is not how the American medical system works.