A new blog worth noting: “Evidence In Medicine”

November 23, 2009 · Filed Under e-pts resources, positive patterns, understanding statistics · 5 Comments

Understanding medical research, at some level, is a fundamental e-patient skill. As we start digging for reliable new information, we have to learn to separate quality from questionable. (If you think medical journals are academically pure, you’ve got learning to do.) A new blogger has emerged who’ll be a big help: David Rind, MD. Read more

Tags: Beth Israel, Blogger, British Medical Journal, Clinical Experience, Clinicians, Conse, Consensus Statements, David Rind, Echos, England Journal Of Medicine, Establishment Radical, Journal Of Medicine, Marcia Angell, Medical Decision, Medical Guidelines, Medical Journals, New England Journal, new england journal of medicine, New Voice, Paul Levy, Peer Review, Richard Smith, Thoughtful Essays

ICMCC: Perhaps the single most valuable e-patient info site

November 16, 2009 · Filed Under Why PM, e-pts resources, pts as teachers · 2 Comments

In last weekend’s post about “patients want all their data” I said I wished I’d known about the article (published mid-May) during last summer’s health data debates in Washington. Incredible Dutch e-patient Lodewijk Bos tweaked me, saying he’d posted it the day it was released.

That led me to ask him to offer email subscriptions. He did, I signed up (you can, here), and holy COW look at ONE DAY’s delivery:
Read more

Tags: California Community, Community Health Centers, Disproportionate Share Hospital, Elder Care, Electronic Health Records, Email Subscriptions, EMR, Emrs, Free Clinics, Guest Article, Harvard Scientists, Health Data, Health Internet, Holy Cow, Jha, Michigan Area, Nhin, Patient Info, Poor Patients, Quality Gap

Participatory medicine and health data rights on NPR

November 16, 2009 · Filed Under general · 19 Comments

NPR’s Morning Edition story, “Patients Turn to Online Buddies for Help Healing,” combined research and real-life examples, participatory medicine and health data rights.

Much of what I said during my interview with Joseph Shapiro is based on what I’ve written and read here on e-patients.net, so, first, thank you.

I’ve already started answering questions on Twitter about some of the assertions in the story, so let’s keep the conversation going here, too. Read more

Tags: Answering Questions, Assertions, Buddies, Case Mix, Collective Decisions, Health Care Decisions, Health Care Revolution, Health Data, health information, Health Professionals, Health Searches, Health Systems, John Horrigan, Joseph Shapiro, Medicine, Medicine And Health, Mediums, npr, Offline Sources, Pareto Principle, Partnership, Person Accounts, Pew Research Center, Real Health, Tom Ferguson, Twitter, Walks Of Life

MITSS: Much-needed support after medical errors

November 15, 2009 · Filed Under Why PM, ethics, hc's problem list, positive patterns, pt/doc co-care, reforming hc · 2 Comments

Ten years ago this week, 11/18/99, Linda Kenney was scheduled for ankle replacement surgery. She woke up three days later in the ICU. Her chest had been cut open. She was in the hospital ten days.

And nobody talked about what had happened.

What had happened is that the nerve block administered to her ankle (a local anesthetic) had accidentally entered her blood. It quickly hit her heart, which was promptly anesthetized and stopped pumping.
Read more

Tags: Anesthesiologist, Ankle Replacement, Annual Dinner, Bind, Clue, Dr Rick, Friday Night, Local Anesthetic, Medical Errors, Mistake, Nerve Block, Open Heart Surgery, People, Replacement Surgery, Slides, Thursda, Trauma Support Services, Truth, Typesetting Program, Unnatural Acts, Van Pelt, Word Act

From incurable to “We can now call you cured”: Cheryl Greene’s story

November 11, 2009 · Filed Under Why PM, e-patient stories, positive patterns · 5 Comments

Here’s another true e-patient story from one of our team.

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD. And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

Tags: ama, Board Member, breast cancer, Breast Cancer Awareness, Breast Cancer Awareness Month, Breast Cancers, Cancer Awareness Month, Drgreene, Executive Producer, Gynecologist, Heck, Hese, Infertility, Inflammatory Breast Cancer, Long Time Friend, Milestone, Paperwork, Patient Story, Physician Web, Pioneer Physician, Recurrence, Remission, Tom Ferguson, True Story, Trying To Have A Baby

Why Participatory Medicine?

November 9, 2009 · Filed Under Why PM, medical records, positive patterns, pt/doc co-care, trends & principles · 23 Comments

For most people, their impetus to be actively engaged in healthcare comes from an experience with serious illness—either their own or a loved one’s. My journey into participatory medicine began during my internal medicine residency at Boston City Hospital, a public urban hospital, in the late 1980s. While there, I had a number of realizations that led to my passion for participatory medicine.

The first was that educating patients and communicating with them effectively pays big dividends in improved health behaviors and outcomes. It is the most cost effective intervention we can offer. Moreover, this only happens in an environment of mutual respect. In almost every patient, there is something to be treasured and respected. Hopefully, they feel the same about us.

Next I realized that so much of what we do in healthcare is information management. An extraordinary effort is invested into locating, organizing, recording, and regurgitating information that is used in patient care. More on this later.

Tags: Assistant Clinical Professor, Beth Israel Deaconess, Beth Israel Deaconess Medical, Beth Israel Deaconess Medical Center, Beth Israel Hospital, Boston City Hospital, Business Solutions Group, Cisco Internet, Clinical Computing, Deaconess Medical Center, e-mail, Educating Patients, Group Assistant, Harvard Medical School, Health Behaviors, Healthcare System, Impetus, Improved Health, Internal Communication, Internal Medicine Residency, Internet Business Solutions, Internet Business Solutions Group, Israel Deaconess Medical Center, Medical Informatics, Mutual Respect, Participatory, Realizations, Urban Hospital

Low-Tech Models of Participatory Medicine: The Astounding Results of Group Prenatal Care

November 1, 2009 · Filed Under general · 5 Comments

A signal moment in the history of this blog was the arrival in late summer of a new ally, the birthing movement, represented by Amy Romano, the blogger at Science and Sensibility, the Lamaze International blog.

Amy gets it: participatory medicine is not just about the internet – it’s about being empowered and engaged. Her first guest post, A lifetime of participatory medicine can start with maternity care, is one of my all-time favorites.

Here’s her next – a scientifically controlled study that demonstrates how being an engaged patient produces life-altering improvements that no physician intervention has achieved. The results span all demographic boundaries and didn’t involve a bit of technology. It’s exciting; please help scrutinize.

Cindy Throop’s personal story of Participatory Medicine

October 24, 2009 · Filed Under e-patient stories · 6 Comments

Like our contributor Sarah Greene, DC resident Cindy Throop was moved by Paulo Freire’s book, Pedagogy of the Oppressed. “The patient revolution must come from patients,” Cindy says. “We can educate and inform patients, but ultimately only patients can speak for themselves.” Here is her personal story of participatory medicine in action in her own life, years before she heard the term.

Several years ago, after dealing with glasses and contact lenses for more than 20 years, I decided to have vision correction surgery. I went to the University of Michigan Kellogg Eye Center, where I was confident I would get the best care possible. After committing two thousand dollars to my health savings account (HSA) to pay for a good part of the surgery, I made an appointment and went in for an incredibly comprehensive eye exam. Read more

Tags: Clinical Judgment, Corrective Surgery, Dc Resident, Eye Exam, Eyesight, Health Savings, Irregularities, Kellogg Eye Center, Keratoconus, Michigan Kellogg Eye, Paulo Freire, Pedagogy Of The Oppressed, Personal Story, Pupil, Risk Category, Sarah Greene, Throop, Topographic Maps, Two Thousand Dollars, Vision Correction Surgery

Journal of Participatory Medicine Launches at Connected Health

October 21, 2009 · Filed Under Why PM, e-pts resources, trends & principles, understanding statistics · 3 Comments

Press release for the October 22nd launch of the Journal of Participatory Medicine:

Improving health care:
Journal of Participatory Medicine
will document methods that work
for patient/provider collaboration

Launch at Connected Health Symposium
features essays by visionaries in
health care, Internet, high tech, business, and sociology

Patient engagement and patient empowerment are popular topics, with hundreds of thousands of Google hits, but there’s precious little information on how to do them well. A new academic journal being launched this week, the Journal of Participatory Medicine, aims to change that.

Created by experienced pioneers of the “e-patient” movement, the Journal will be introduced this week at the Connected Health Symposium in Boston, hosted by the Partners HealthCare Center for Connected Health. The Journal is an official publication of the Society for Participatory Medicine, founded in 2009 by the patients and physicians who have worked together for several years at e-patients.net.

Tags: Academic Journal, Anecdote, Care Delivery System, Features Essays, Google, Health Care Internet, Health Care Journal, Health Press, Health Professionals, Health Symposium, Healthcare Center, Improving Health Care, Launch, October 22nd, Partners Healthcare, Patient Empowerment, Patient Involvement, Patient Movement, Personal Health Data, Principles Methods, Symposium Features, Visionaries

Superheroes and rock stars at the Institute of Medicine

October 14, 2009 · Filed Under Why PM · 23 Comments

The Institute of Medicine’s recent workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine. Read more

Tags: Abernethy, ACOR, Afterthought, Annals Of Internal, Annals Of Internal Medicine, Chordoma, Clinical Trials, Dartmouth, Denial Anger Bargaining, Emory, Georgetown Md, Gilles Frydman, health information, Institute Of Medicine, Jamie Heywood, Md Anderson, Myspace, Oncology, Optimists, Participation Data, Patient Participation, Paul Wallace, Podium, Radicals, Raising Money, Rock Stars, Simone, Superheroes, Transparency, Vanderbilt, Youtube