This weekend marks the first anniversary of my first blog post ever. Great time to look back, in preparation for looking forward.
I'm going to post a recap of the past year, in several chunks. This first one covers the first three months, from when I started, not knowing where this would lead. The three month mark happens to come just as I left to join the e-patient working group for their annual retreat in Texas.
11/29/07: Thank you, Beth Israel Deaconess!
Dr. David McDermott, oncologist; Kendra Bradley, RN, manager of my biologic therapy program; Mee-Young Lee and Virginia Seery, nurse practitioners; Dr. Megan Anderson, the orthopedic surgeon who fixed my leg; the nurses of Stoneman 7; Dr. Danny Sands, my primary physician, and, I later learned, a pioneer in the use of doctor-patient email. Lucky me!
I suppose I could thank CEO Paul Levy, too, but what does he know. :)
12/4: Thank you, Dr. Drew Wagner!
Then I remembered there was this surgeon involved, who removed the kidney. Oh yeah, him.Read this, if you haven't. Extraordinary surgeon, but I almost beaned him with my cane.
12/7: What's it gonna take?
12/8: For prettier statistics, omit inconvenient people.
Given that I've been talking a lot about statistics lately, I was surprised to see that it was one of my first posts. But today I see that misunderstanding statistics - or not reading them critically, thoughtfully, inquiringly - may be a root cause of the mess that American healthcare is in today.
12/9: Thank you, Harvard Pilgrim!
1/14/08: Don't fall for SEIU
This was an early warning. This union has gone on to use despicable tactics against this hospital, with all kinds of claims of employer abuse, meanwhile advocating an end to secret ballots when employees vote on whether to unionize. There's a lot about this on Paul Levy's blog. They're liars; don't believe a word they say.
1/19: What is the nature of wellness?
An early inquiry into the nature of the immune system. I continue to think, intuitively, that this is valid. And, in Anticancer, the author cites evidence that the immune system functions better "when it's in the service of a life that's objectively worth living" (whatever that means). My gut agrees.
1/20: On the health of complex systems
A note on my friend Dorron's little blog about his deep work with analyzing statistics to predict system failures. I see a future for this in healthcare.
(1/23: Dr. Sands steered me to e-patients.net)
1/24: What's next - Google Health??
My initial, highly skeptical take on Google Health. My views on this are changing: as I study healthcare I'm coming to think that (a) there's a lot of potential patient benefit in aggregating our data, (b) it ain't happening rapidly on its own anywhere else, (c) the privacy concerns that I spoke of are not nearly as "worse" in Google's case than than they are in HIPAA-covered entities, because in reality hardly anything ever happens with HIPAA violations (from what I've heard).
Bottom line, if reality today was what most people think it is (and I thought it was), Google Health would not be worth the risk. But it's not, and there's a real opportunity for us to take matters into our own hands. I'm likely to sign up.
1/26: Colas and kidneys
1/27: Books that make you dumb? I don't think so.
Another early post on misinterpreting statistics.
1/28: e-Patient? Yes, e-Patient.
After reading the e-patients white paper, I "re-branded" myself from Patient Dave to e-Patient Dave. Why? Because I discovered that everything about the way I'd approached my illness was completely aligned with the trends in the paper. And I immediately saw what I'm going to do with "the new life of Patient Dave": do everything I can to promote this agenda for positive change.
1/29: Seeking medical data on the web
"Last week's post on eDocAmerica cites a report by the US Center for Medicine in the Public Interest (CMPI) documenting that searching for medical information on the Internet can cause serious problems. Here's the comment I posted there (edited slightly for this context). Please read it listening for the shift in the wind that's underway with the e-Patient movement I wrote about yesterday...
"Having read most of the e-Patients "manifesto" (white paper) in the past few days, I find the CMPI report rather like a belching volley from a dying breed. (I know they mean well, but they don't yet get it.) ..."
2/7: Latest on the e-Patients blog
"In a time of drastic change it is the learners who survive, while the 'learned' find themselves fully equipped to live in a world that no longer exists.
—Eric Hoffer"
2/7: Web 2.0 means we get to say.
A key topic I've learned about in 2008, at work and in healthcare, is what's called "Web 2.0." Some call it "the read-write Web" because you can post things on the Internet now - it's not "read-only" like the early Web, where you could look things up but you couldn't write anything into the Internet.
The impact of that has been massive. It's not just that we can write blogs and talk to each other; we can now be publishers, and we now have access to thousands of times more information than in the past. Enabled by this, Ordinary Us can learn things and make informed choices that were never possible.
Students of the subject call it User Generated Content (UGC):
"...This that you're reading, right here, is user-generated content.
"And the big thing about THAT is that it's enabled us to spout our opinions, for instance rating books on Amazon or even posting our own book reviews, as short or as long as we want.
"What this means in the world of e-patients is that we ourselves get to talk about anything we want; instead of reading only what a magazine editor thinks we want (or need to know), we ourselves get to start any discussion we want and take it anywhere we want.
"You could put it this way: Web 2.0 means we get to say. We get to say whatever we want, and we even get to say what gets talked about...."
2/10: An e-patient writes in Newsweek.com
(about Amy Tenderich of the widely-read DiabetesMine blog)
"Here's a perfect e-patient snip from her article:I'm just astounded to think that one sick mom in California can reach out to so many fellow patients, create a community, and actually turn the whole thing into a business."Amy's story illustrates a major aspect of the e-patient movement: that if patients (the consumers of healthcare) get to start conversations and other patients get to take those conversations wherever they want (a.k.a. "We get to say"), the most useful conversations will thrive, and all of us - consumers and providers alike - will benefit.
2/10: Don't be a jerk to your partner.
As one learns about the fallibility of the healthcare system sometimes there's a tendency to start barking at the doctors, which makes no sense. Some doctors may be arrogant fools, but IMO that's just as true of patients. And good luck to any patient who tries to play the doctor's role in treating kidney cancer or reconstructing a shattered leg.
The world of the future involved participatory medicine, collaborative medicine, a partnership: "The point of the e-patient movement is to create partnership with your providers. If your physician is new to the idea, share, don't clobber."
2/10: Let's spread the term "e-patient"
2/11: MSNBC covers CaringBridge and CarePages
2/18 (my birthday): Randy Pausch: "Alive and Healthy"
2/19: A Singing Valentine from a barbershop quartet
2/20: Our cancer journal is e-published!
I'm so happy to announce that my community's CaringBridge cancer journal has been published online, for anyone to download (free) or read online. Laugh, Sing and Eat Like a Pig: My Year of Living Cancerously now has an official home on the ACOR web site.
A week later, I headed off to Texas, to meet the e-patient team for the first time. Nothing's been the same since. :)
Continued in Part 2
Happy birthday to your blog!! And congrats again not only on surviving so sanely while being an inspiration to the rest of us but on doing so much to increase awareness of e-patient themes ;->
ReplyDeleteYours in the bonds of the Hunters.
Happy birthday and many kudos for your work!!
ReplyDeleteLodewijk
People, we are honored to have Lodewijk Bos join us here. He is the author of the ICMCC blog in the Netherlands, is president of ICMCC, and a frequent speaker at healthcare events in Europe. He's also a cancer-beater himself.
ReplyDelete(For those who don't know, "Lodewijk" is the Dutch equivalent of Ludwig.) (I think!)
The Acquisition Of Medical Knowledge Does Not Mean Understanding Of Medical Knowledge
ReplyDeleteThe Health Care Industry, particularly in the United States, needs to evolve and revolutionize for the benefit of those who utilize the services of this industry, which is the public.
Among other issues that need to be rebuilt and corrected, there is the issue of patients misunderstanding their health care providers who happen to overestimate their patients’ health literacy. That seems to be in the process of being corrected in large part- that issue.
Health care has been called recently the most crowded market in cyberspace. There is a strong desire by these so many others to collect, refine and share health care and medical information they seek so often in order to gain valuable knowledge- such as with patients who have some concern or actual disease or medical condition , unfortunately.
Patients desire to manage their specific health concerns in order to supplement the advice and treatment regimens provided by their health care providers.
Patients do this with what essentially is a subculture of this healthcare online network avenues more are discovering and joining for their own health and desire for increased knowledge about medicine and health care, which includes health care providers as well. Presently, there may be 100 or more new and innovative sites which are called, as a group, Health 2.0- social networking sites, and began their creation well over a decade ago.
Mr. Matthew Holt created the term ‘Health 2.0’, and also created: www.thehealthcareblog.com.
Types of Health 2.0 users and why they seek information from these internet sites include reasons such as to manage their own health and possible disease they may have, as well as make treatment decisions regarding these issues.
About 150 million people are users on Health 2.0 for this reason, which means they now exceed health care providers as a primary source for them to receive medical and health care information. In addition, there are those who seek information for reasons of medical education, which again may include the public and the medical profession for other different reasons. The medical profession and its members utilize Health 2.0 to enhance their own medical practices for the benefit of their patients. All reasons for why they wish to become informed are valid and ultimately beneficial.
Benefits of Health 2.0 include the potential to increase the qualities and outcomes of patients with various disease states.
Also, Health 2.0 networking sites can decrease health care costs as well as reduce medical mistakes and decrease the number of doctor visits for patients. Patients are happier and healthier because of this, as they are now equipped, empowered, enabled, and engaged in their own health, thanks to health care social networking sites that now exist.
It is in fact a method of participatory health care that allows these others the ability to rapidly share, classify, and summarize individual health information. This improves health care systems and experiences that benefit the public health, overall. Yet this has concerning issues involved with this sharing of information. Opinions and recommendations from essentially strangers likely void of medical training, overall, may do more harm than good to those concerned about their health that seek such information.
How do the users of such systems perceive this new concept and paradigm with health care? Most users of these health care systems find the information they seek and locate are very useful for them. Most also seek and locate information regarding a particular disease or medical problem. The user of such sites usually visit many medical and health care sites on particular health care social network locations, and others seek such information before their next doctor visit to be knowledgeable and prepared about their own health. This is hopefully what occurs, instead of those with medical conditions attempting to doctor themselves.
For those others who utilize health care networking sites designed for patients, or community sites, they may become members on particular sites in order to communicate with other members who may have similar health or medical concerns as their own. They are allowed to quantify their own experiences by sharing and annotating their symptoms and treatments, if these things exist. So this system on such sites ultimately allows patients to possibly manage their diseases with this advice available immediately to them by others who have accessed the site another may be exploring at a certain time.
Other categories of health care social networking that are not necessarily designed specifically for patients and consumers include general interest sites, medical research sites, disease and medical condition sites specific to each ailment. There are also those sites that offer health advisory services, heath financial services, personal health records, comparative health website services, representative consumer empowered tools, as well as other health care network sites that may not fall into a specific category.
Yet all Health 2.0 sites seem to share similar themes are qualities:
- They impact noticeably on the traditional and collaborative practices historically associated with the medical profession and their relationship with their patients. These sites allow the users and providers to connect with each other in a new and exciting way.
- Personal healthcare can be provided by users connecting with health care providers in such a way.
- Partnerships can be formed to reform health care delivery, as sites with Health 2.0 promote outgoing medical education
- The participants, or users of these sites, are involved to a greater degree now that these sites exist.
Others that choose to utilize their health care needs with Health 2.0 web sites appear to be healing not only themselves, but health care delivery overall by the utilizing and sharing that occurs on such sites.
Patients are indeed a virtue, as they and others are democratizing health care with this new avenue of Socratic learning, yet should be utilized with caution by users of such systems.
This, indeed, is authentic patient power as long as the patients validate what they may read,
Daniel Abshear