Monday, April 30, 2012

Collaborators: your providers, technology and you


[a shorter, modified version of this article was published in the KQED "State of Health" blog

Not very long ago a patient’s medical chart was considered proprietary information belonging to healthcare providers. Today, technology is catalyzing a major change in the relationship between providers and patients.

More patients have access to their data now that medical records are increasingly electronic. And more of them want access: patients who were told they could read their charts were 11 percent more likely to be “very satisfied” with their hospital experience in one survey. 


Does your doctor care?

To be sure, healthcare providers have a financial incentive to guide patients toward becoming more active managers of their own health: new Medicare reimbursement strategies will hold providers accountable for encouraging patient engagement.

But it is emerging technology that shapes much of the change. The responsibility to accrue and report data no longer rests solely on the provider. Patients may use mobile apps to keep track of blood sugar levels and lab results arrive in their’ email. So what does the emerging doctor-patient relationship look like?

“Patients, when they come to the doctor seeking health care, aren’t necessarily looking for 'raw data' – they have already looked it up online. Instead, they are looking for meaning,” wrote Bay Area family physician Dr Robert Rowley. Rowley is also medical director of electronic medical record company Practice Fusion.

“The role that physicians play is shifting… (to) somewhat of a coach; a trusted advisor,” he said in a recent interview.  A patient may want to discuss their medication, for example, if new or dangerous side effects were recently reported in the news. In a situation like that “my role is more of an interpreter,” Rowley said in an interview.


Best Practice

Rowley believes that the best care he can deliver today includes helping patients sort through and understand the “chaotic array of overwhelming data” as it relates to each individual’s health. After doing a web search on their diagnosis, he said, “a patient will say ‘help me understand this; help me find meaning.’”

A recent study demonstrates the effect a personal doctor-patient exchange can have – not just on patients’ experience, but on their health outcomes. Los Angeles cardiac patients who had the opportunity to see their heart scans -- clogged arteries and all -- were more likely to undertake cardiovascular risk reduction measures such as taking losing weight.


What's a doctor to Do?

With findings like these the image of the didactic, authoritative physician is giving way to that of a coach or even a collaborator, albeit one with domain expertise in health science. The authors of a recent NEJM editorial Goal-Oriented Patient Care wrote “The clinician needs to explain what is possible and negotiate potentially achievable goals with the patient. Then the clinician should provide a treatment plan, encouragement, and advocacy to help the patient…” 

When patients are in acute distress — perhaps unconscious or incapacitated after an accident —treatment may still start without much input from the patient. But the situation is very different for patients with chronic conditions. In those cases, because patients control their diet and decide whether or not to take their medication, they largely control their own health outcome. 

Because more patients are living longer with chronic disease and because of changing financial incentives, the new face of care is definitely more personal. “Through a better understanding of the patient’s story, we can begin to see how we can truly help patients,” wrote family physician John Krueger in his oft-cited editorial The Patient Will See You Now. (Journal of Participatory Medicine, December 28, 2011)


#HCSM
 
In an April 9 interview, orthopedic surgeon and new media enthusiast Howard Luks said he tells physicians “this is about relationships. I tell them that this is about stories. We treat patients. We don’t treat x-rays or MRI findings.” Luks is is associate professor of orthopedic surgery at New York Medical College.

But technology has a substantial influence on how the relationship changes, as with the cardiac patients who committed to taking their medication not because the doctor prescribed it, but after because the doctor showed them their clogged arteries.  Luks said

Patients are researching online. They’re researching and diagnosing themselves through WebMD and then they’re searching for physicians who have expertise in that particular area.

Physicians are starting to realize that it helps us regain or recapture those relationships that older physicians had with their patients. They knew their patients…They knew their patients had a recent baby, or that they just bought a new house, that they moved, or they got a new job, or got a puppy, or whatever. Having a relationship with your patient in that respect for some is special and meaningful.

Much of that information is shared now via social media, and the rarely reticent Luks said it’s imperative to get involved. He tells physicians “If you choose not to engage (with new media), then I feel that is to ignore your own relevance as a healthcare practitioner.”

Monday, March 26, 2012

BRCA, the Supreme Court and Empowered Healthcare Consumers

The corporation claiming a patent on breast cancer-linked genes does not have that right, the Supreme Court said today, at least until after further legal review. The case involves patents on the human genes known as BRCA1 and BRCA2 (for “Breast Cancer” 1 and 2) held by Myriad Genetics, Inc.

Although at least 90 percent of the time breast cancer is sporadic, these two mutations alone are believed to cause most hereditary breast cancer. In families suspected of having or already identified as having a mutation, women can choose to take a blood test that reveals significant information about their individual risk. The patents, however, have effectively given Myriad a monopoly in the U.S. on breast and ovarian cancer screening tests since 1994.

A lawsuit filed in 2009 claimed the patents violated patent law, restricting scientific research and patients' access to medical care. One barrier for patients has been the cost of the test: it ranges from about $300 to $3,000. The less expensive test only examines the few areas of the gene where the mutation is commonly found.


When it’s no longer academic
Many healthcare consumers and breast cancer patient advocates will be glad to hear the Supreme Court decision. That’s because competition in the marketplace for genetic testing may help empower patients and their families by eliminating barriers to the flow of BRCA status information.

While mutation carriers are not doomed to cancer and certainly not to death by cancer, women diagnosed with cancer who are facing treatment decisions are also motivated to get this information from their genome. The mutation raises serious, specific treatment issues, for example: when is mastectomy the best choice? When should a woman consider having her ovaries removed? And what about chemoprevention?

Yet genomics information can only take us so far toward actual decisions:
Each of us has a set of deeply rooted beliefs whose profound influence we may not realize when we make medical decisions. How much trust we place in authority figures, in statistics or in other patients’ stories, in science and technology or in natural healing, whether we seek the most or the least treatment - all are key factors that shape our choices. (Jerome Groopman, MD and Pamela Hartzband, MD: Your Medical Mind)

And access problems won’t be fully solved by the free marketplace. “Most physicians feel uncomfortable with genetic tests, and many have never ordered one,” wrote Robert Klitzman, MD in a recent article, Genetics as Rohrshachs: Pondering Genes and Fate. “Doctors trained more than 10 years ago often have little knowledge about these new assays.”


Beyond Information
Hereditary cancer is fraught with social and psychological concerns. The NCI urges healthcare consumers to consider the usefulness of genetic counseling. Only when we confer with a qualified individual to discuss our personal and family medical history as well as the accuracy of the test and implications of its results do we achieve the decision-making trinity:  information, in context, with support.

Klitzman recounts a newly diagnosed woman who told him "I thought the (BRCA) test would give me answers…but it's just left me with a lot of questions."


Information, context, support
When physicians collaborate with patients and caregivers to make medical care decisions, patients feel more comfortable with and confident in his or her treatment-related decisions, according to the Agency for Healthcare Research and Quality (AHRQ)

When patients shift from being “passengers” to being responsible “drivers” of their health -- with their healthcare providers’ encouragement – we see participatory medicine emerge. Patient empowerment includes getting access to more and more precise information. But in breast cancer, genomic information is only one leg of a sometimes wobbly stool.
#
Good information about hereditary cancer is available from the advocacy group FORCE, (Facing Our Risk of Cancer Empowered) and the National Cancer Institute (NCI).

Monday, February 20, 2012

Checklists for Hospital ePatients

The Patients' Checklist is a valuable, user-friendly resource for people facing a hospitalization. Since we're all just one stroke of misfortune away from that fate, it's $11 well spent for anybody who can read and write English (and I bet translations would sell, too!)

"Wish I'd written this!"
The book represents yet another item on my personal list of "wish I'd done that!" Author Elizabeth Bailey's first career was more glamorous than mine; her schooling more prestigious and the medical errors her father suffered seem more egregious. Still, I can relate - and I bet you will, too.

If you've ever been in the hospital as an adult or watched over a hospitalized patient, you will recognize the wisdom of her advice. Checklists include but are not limited to:
  • Before You Go
  • What to Bring
  • Master Medication List
  • Doctor Contacts

Easy to read
The book design is thoughtful: spiral bound, so it will lie flat while you write. Tabbed, so you can find information quickly. I found the quotes and relevant data about healthcare inspirational, but it's not emphasized and would be unlikely to distract an active checklist user.


Building on this idea
My version of this guidebook would include more information about how to proactively affect the patient's health outcome. Protecting oneself from errors is the baseline; true wellness is my epatient goal. 

For example, a few pre-op hours spent in visualization can yield dramatic results. There is evidence that pre-operative preparation can yield positive outcomes for pain relief, decreased anxiety, and decreased length of stay in orthopedic patients.

The book is focused on hospitalization, but of course, most care is provided in outpatient settings. So the sequel should include checklists for patients in the community.

Some patients and their families will want an electronic version; one more easily shared across distances or dynamically updated. If you prefer electronic data management there are many mobile apps and software programs vying for your attention. 


Among the many helpful available online checklists and templates are
It's easier than ever to be an epatient! Following the advice in The Patient's Checklist and using the tools cited here can help improve the life and health of someone you love -- and unfortunately, failing to do so may leave you vulnerable to problems.