A recent national summit in Philadelphia gathered experts from the medical community, pharmaceutical industry and – most important of all – patients, sitting down together to craft a better way to deliver health care information. Or, as the conference Web site says, to “benchmark best practices for reaching and supporting digital health consumers.”
I was one of 20 patients from around the country involved in coming up with an “ePatient Bill of Rights.” This manifesto is a challenge to the health care industry to overhaul a broken system that seems to put the interests of everyone else – insurance companies, hospitals’ bottom lines, pharma’s drug patents – ahead of their consumers: America’s patients.
That’s not right; and we're out to fix it.
Are you a patient?
Absolutely. Unless you’re the healthiest person on the planet, you’ve been to see a doctor at some point in your life. And, for many of us with serious and/or chronic health issues, seeing a doctor isn’t the typical once-a-year physical: check your BP, look in your ears, see you later.
For “permanent patients,” staying relatively healthy is a work in progress, a regular part of life. One that can be scary, exhausting and, ultimately, frustrating, as systems – both the medical industry’s, and your own – break down and fail.
Since the time of Hippocrates, people have elevated doctors to a God-like position, seeing them as the all-knowing dispensers of medical wisdom, comfort, and cures. As Chris Schroeder, HealthCentral CEO and a key speaker at the conference, said, “…it really is shocking how much has been beaten into our DNA that health decisions are made by someone else.”
So true. We grow up believing “doctor’s orders” are something to be followed, not questioned. They’ve been to medical school; they’ll tell us what to do about that sore throat, aching back – or cancer.
But in our new digital world, a huge amount of knowledge is just a mouse click (or finger tap) away – from everyone. And you may very well know more about your inflammatory breast cancer or osteogenesis imperfecta than your 65-year-old GP, whose formal medical training concluded 40 years ago.
Attention: in today’s world, your doctor is no longer God. It’s OK to come to your appointment armed with information, a list of questions, and the expectation of a meaningful, productive two-way dialogue about your condition and how to treat it.
If you agree, congratulations: you are now an empowered patient. And you’re ready to embrace your new Bill of Rights, as developed at ePatient Connections:
•Shared access to my data
Digital health records will make it possible for you to access your medical information whenever you choose. Those test results, pathology reports, and labs are an assessment of YOUR body, YOUR health; read them, understand them, and make sure you can get to them when you need them.
•Attitude of collaboration and overall respect
Whoever you deal with around your health, you should expect to be respected and heard.
Don’t accept a brush-off from your doctor; if you don’t understand something he’s said, ask him to repeat it. If you still don’t understand, ask for an interpreter; medicalese can be tough. But never believe you’re not smart enough to understand your own health; the challenge is in communication, not in the information itself.
Likewise, you’re “allowed” to question your doctor’s treatment recommendations. Don’t waste his or her time arguing the relative merits of the vinegar cure for cancer, when you know s/he’s an oncologist using scientifically proven data to develop your treatment plan.
But do expect your doctor to respond to your concern about removing all of your underarm lymph nodes to check for cancer spread; s/he might not have seen the latest study showing that a complete axillary lymph node dissection is overkill.
•The patient is the largest stakeholder
This would seem self-evident – but too often, this simple fact gets lost in a shuffle of systems, process, and paperwork.
As patients, we initiate the health-care process, especially when it comes to illness. We don’t feel well; we go to the doctor.
But as we see first a scheduler, then a nurse, then a doctor, then perhaps visit the lab, get a second opinion, access a specialist, visit the pharmacy, or even undergo surgery, we become tangled in a morass of appointments, insurance paperwork, and competing schedules.
And somewhere along the way, the purpose of all this busy-ness – making us feel better – seems to get lost. Or at least buried.
The devil is in the details. Necessary as they are, let’s not let them obscure the fact that our return to good health is job #1.
•Transparency and authenticity across all areas
When you visit the doctor, tell the truth about your health. If you didn’t take the drugs on schedule, didn’t exercise three times a week – be honest. Lying isn’t helpful; it only leads to ineffective treatment.
By the same token, expect honesty from your doctor. If s/he doesn’t know what’s going on, s/he should tell you – and listen to you, when you think you have some answers.
Likewise, expect transparency and honesty from the companies that supply your drugs, and the insurers that pay for your care. Hey, AstraZeneca – if Arimidex causes hair loss, as so many women report, be upfront about it; don’t bury that important possible side effect in a jumble of fine print.
•Voice of the patient is a legitimate (clinical) source
Repeat after me: I just might know more about my condition than my doctor does.
As mentioned above, the age of digital information has made it possible for anyone to easily access a copious amount of medical knowledge – from the results of clinical trials worldwide, to an array of drugs used successfully in Europe, but unavailable in America.
Doctors are human; they can’t know everything, nor should we expect them to. It’s up to us to arm ourselves with knowledge about our own health – and it’s up to our doctors to listen to us when we bring well-researched, credible information to the table.
•The right to efficient communication with providers who utilize the technology that we need
To me, this is the crux of our proposed new world of health care delivery.
I’m sick and tired of spending 90 minutes on the phone with my insurance company as I get shuffled from agent to agent, each more clueless than the last, and in the end wind up with two completely opposite answers to my simple question.
I’m discouraged by a medical system that allows communication only via telephone, and then doesn’t return my call for days – if ever. May I suggest a digital approach, folks? Businesses all over the world communicate with their customers very effectively via email.
I think it’s silly to waste time and gas going to the hospital or doctor’s office for a simple follow-up – “How do you feel?” “Fine, no problems.” “Great!” How about Skype?
There’s a great new world out there – a digital world. We empowered patients can access more information, more quickly, than anyone would have thought possible 20 years ago.
We can ponder our own medical records. We can read about others with our health condition successfully undergoing treatments you might not have heard of.
We’re not afraid to share what we’ve learned. And we expect our health care to be a collegial affair, not parent/child. “Doctor knows best” is no longer a given.
In the end, it’s up to us, all of us, to take care of ourselves. And that means using digital technology – from Google to email to YouTube to Facebook – to better our health.
To better our lives.
Published On: October 02, 2011