At last weekend’s MITSS patient safety workshop, some of us remarked out loud that it would be great to have a simple video teaching newly admitted hospital patients the importance of hand washing, and even showing them how to speak up to a staff person who doesn’t wash before touching.

Well, seek and ye shall find: this just arrived via Twitter, forwarded to us by Susan Carr, editor of Patient Safety and Healthcare Quality magazine. From the good people at CDC:

I especially love that they posted (at http://www.cdc.gov/CDCTV/HandHygiene) all sorts of ways to use this resource: the embeddable code for the video, downloadable versions of the video file, a PDF transcript, and an overdubbed Spanish version (with Spanish transcript).

Hey hospitals – let us know when you’ve made this (or an equivalent) available to your patients!

A friend of mine, Ms. S., recently had an unsettling experience with a company called Caremark (the parent company of pharmacy CVS), whom she fills her prescriptions through. She was reordering a prescription refill she buys through the mail, and needed to pay for it. She tried logging onto their website to pay, as I’m sure thousands of people do everyday, but because her order was “In process,” it wouldn’t let her pay for it.

Caremark called her this morning. The conversation went something like this…

Caremark: “Hi, this is ****** from Caremark. I’m calling about a recent order. Can I get you to verify your name, date of birth and mailing address?”

Ms. S: “I’m sorry, but how do I know you’re from Caremark? You called me.”

Read more…

New concepts need gimmicks. Proven concepts do not.

The phenomenon of using the internet to gather and share health information is now mainstream. It’s time to change how we talk about it, revising and maybe even retiring certain terms. Carlos Rizo and I invite you (everyone!) to join our discussion on Wed. Sept. 1 at 12noon Eastern: E-patients, Cyberchondriacs, and Why We Should Stop Calling Names.

Some history to build our case:

In 1998, only about one-third of American adults had access to the internet. Harris Interactive published pioneering research about how internet users gather health information online, dubbing these 54 million people “cyberchondriacs.”

In 1999, Tom Ferguson, MD, came up with the term “e-patients” to describe individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. He began work on a white paper, commissioned by the Robert Wood Johnson Foundation, to describe this new development.

In 2000, Lee Rainie and I wrote the Pew Internet Project’s first health report, The Online Health Care Revolution, using the phrase “health seeker” to describe someone who used the internet for health information.

Just to remind you of the sea change we’ve been through, in the year 2000:

• 46% of American adults had access to the internet (now: 74%)
• 5% of U.S. households had broadband connections (now: 66%)
• 25% of American adults looked online for health information (now: 61%)

Over the last 10 years, using the internet to get health information has become an assumption, not an exception. The repetition of this finding from every sector — for-profit, non-profit, academic, government — has made it boring.

But I draw inspiration from Clay Shirky, who has said, “Tools don’t get socially interesting until they get technologically boring.” Read more…

Today I’m participating in a workshop, “Engaging Minority Communities in Safer Healthcare,” organized by MITSS (Medically Induced Trauma Support Services), a Boston non-profit I’ve written about before.

The current speaker is Lisa O’Connor, VP of Nursing at Boston Medical Center. She just showed this four minute safety awareness video, produced by Quantros. Much of its content will be familiar to our readers here (the frequency of medical errors and hospital acquired infections), but I’m posting it here because of its good, concrete, specific actions every patient should know. That part starts around 2:30. (My highlights below.)

Read more…

We welcome Peter Frishauf as an author on our blog. Peter is on the Editorial Board [brief bio] of our Society’s Journal of Participatory Medicine, and as described below, has already authored some important material on this subject. His first post here is triggered by an article in Tuesday’s New York Times that generated much discussion on a vital subject: how we reality-check what we think we know, as a basis for science, and especially for medical advice. – e-Patient Dave

It’s a recitation of the obvious: without reliable, high-quality peer-review, medical information and patient care suffer.

Sadly, academia and broken peer review are also linked to our tenure system. We need to fix that.

I hate to condemn with a broad brush: many academics care deeply about better patient care and believe – genuinely – that tenure is a good thing. As Wikipedia describes it today, tenure “protects teachers and researchers when they dissent from prevailing opinion, openly disagree with authorities of any sort, or spend time on unfashionable topics.” But sadly, the vast majority of academics acknowledge that an even more powerful benefit of tenure is pretty damn good job security. Tenure has much more to do with money (lifetime job security) than academic freedom. Read more…

Well, here’s a treat: Dr. Charles Smith, a founder of the Society for Participatory Medicine, recently gave a lecture at Duke titled “How to Become a More Effective e-Patient.” Here it is, in four YouTube segments.

“Charlie,” as we all call him, is a wonderful guy. He’s co-editor-in-chief of the Journal of Participatory Medicine and was Doc Tom Ferguson’s physician. He’s been walking this walk for many years, and here he shares his personal advice – not just for patients but for health professionals who want to learn this participatory thing.

(The “Joe & Terry” he mentions are our founders Joe and Terry Graedon of People’s Pharmacy, longtime Duke associates.)

An audio-only version is at bottom. Here are the videos.

Part 1

Read more…

When you have a doctor’s appointment, and she makes some notes and later formalizes them for your medical record, would you like read them?  There’s been debate over the years about whether patients should read the notes that doctors write about them and their health issues — in academic circles, in a great Seinfeld episode where Elaine’s dermatologist won’t let her see what he wrote about her, and more recently in a New York Times piece that discusses the promising OpenNotes project.  I think this is the wrong question.  Instead, you should walk into your doctor’s office with a video camera or tape recorder.  More on that in a moment.

The discussion about doctor’s notes might seem silly, since for many years we’ve had the right to go the medical records department and get copies of our records.  So all we’re talking about here is making that more convenient, for example, by letting you log into your online account and see the notes there.  However, this is much more than convenience, it is a cultural statement: we, the doctors, should sincerely invite you to read our impressions, our thought processes, our decisions; and learn from them, even question them.  While this is a powerful statement, we’ve gotten distracted by this artifact, the doctor’s note.

Instead we should focus on the communication it represents.  The goal is not to sneak into the doctor’s inner thoughts and see what he’s really thinking about me, rather it is to gain a deeper understanding of my health and add a channel of communication from the doctor whose precious minutes just aren’t enough.  (By the way, to those who fear doctors will no longer be able to write what they *really* think, I have two comments.  First, patients can already request copies of their records, so be thoughtful in your notes!  Second, I would consider supporting a separate area for comments that the doctor sincerely feels are in the patient’s best interest not to see and are only for other clinicians, similar to what’s done today for mental health records.)

What we should be focusing on here are the best ways for the patient to understand and remember the doctor’s guidance, including the Q&A that typically happens during the visit.  The doctor’s note hardly addresses this.  It’s designed for the doctor to communicate to other clinicians who will later care for the patient, and in practice it’s increasingly full of not-so-useful information included for billing purposes.  Sometimes the doctor will create a separate note explaining the plan to the patient, especially if his EMR auto-generates a template for this.  But this is uncommon, and it provides only a brief summary of the outcome of the discussion.

I encourage loved ones to take a tape recorder or video camera to their doctor’s appointments, especially ones where new or critical issues will be discussed like whether or not to have surgery or how aggressive to be in treating a cancer.  Most of us have experienced how little one actually remembers when fear or stress levels are high.  Being able to review the conversation again later can make a huge difference in understanding and better decision making.

As a doctor, does it make me nervous when someone wants to record our conversation?  Yes.  Because it holds me even more accountable to communicating clearly and taking good care of my patients.

(This post was cross-posted on Huffington Post.)

Next in our series of posts about our founder Doc Tom. Previous time capsules: 1980 and 1985.

Come, ye economics buffs and algebra fans; get out your pencils and solve for x, n, and XX:

Whatever else the year 19XX is remembered for, it will — without a doubt — go down in history as a record year for medical expenses here in the United States. All indications are that before the calendar year is out, Americans will have spent $x (n% of the Gross National Product) on drugs, X-rays, surgery, physicians’ fees, laboratory tests, hospital overhead, health insurance, etc. That’s up from the [$0.3x] ([.7n%] of GNP) just 13 years ago.

Clearly, the medical establishment has become a threat to the average American’s budget (if not his health).

Ready? That was… Read more…

Last Friday we dug up our founder Doc Tom’s Seven Laws of Self-Care, from 1985. At one time Tom served as medical editor of the Whole Earth Catalog, the Woodstock-era empowerment resource whose subtitle was “Access to Tools.” At left (click to enlarge) is the cover of the original 1968 edition – just as I was getting out of high school.

(Yeah, I know, some of  you punks weren’t even born yet. Let’s see if you live this long.)

Well, that same data-spelunking expedition found this, even earlier:

"Doc Tom"in Mother Earth News, 1980

What You Should Know About Drugs – an interview by Tom in Mother Earth News with Joe and Terry Graedon. They had already founded the People’s Pharmacy, which is now of course a very successful website (and radio show and book series and online user forum…).

Twenty-nine years later the Graedons were among the co-founders of the Society for Participatory Medicine. Check out these early signs of defining an engaged, educated patient:
_____

FERGUSON: What is the most important fact to know about drugs? Read more…

If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group?

This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.

As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:

Read more…