This blog welcomes guest posts from SPM members on relevant topics. This is a blog post by Annette McKinnon, an e-patient in Canada. Annette is an enthusiastic advocate for patient inclusion in research and healthcare decision making. She has had rheumatoid arthritisfor the past 30 years, and has a background in market research. She attended the Stanford Medicine X Conference in 2014 as an ePatient Scholar, and in 2013 and 2014 was moderator of the Reaching Out With Arthritis Research (#eROAR) tweetchat for the Arthritis Patient Advisory Board of ARC (Arthritis Research Canada).
She sits on the Board of Directors for the Sjogren’s Society of Canada, and is a volunteer Health Mentor for the Centre For Interprofessional Education in Ontario, a member of Patient Partners in Arthritis and the Canadian Arthritis Patient Alliance. She tweets as @anetto and blogs about health related issues at “Your Gold Watch – Rheutired“
Today I watched a youtube video of the Institute of Health Services and Policy Research (IHSPR) Policy Rounds – Improving Care of Multiple Chronic Conditions The webinar is from March 26, 2014. I found out that in Ontario chronic disease accounted for at least 65% of direct health care costs in 2010/11 and it would not surprise me if that number is typical across Canada. In the US that percentage might not be the same since the health care system is different.
This came over my transom from a friend who works with a major medical school’s digital publishing group. Seems both relevant, and high impact. – Casey
by Candace Barnes
When I left for the hospital
The night was bitter cold,
And snow lay on the ground.
I know of weather what I’m told;
There is no weather here.
My stay is longer than expected
And day folds into day.
Time passes slowly, hour by hour,
Less real the longer I stay.
But still the time marches on.
Coming home from the hospital,
The chill was gone from the air.
The snow has melted all away;
The yard is dotted with crocus here and there
And daffodils push through the ground.
While I was ill the seasons changed.
I left in dead winter, came home in early spring.
Just as the seasons chase one another,
My illness waxes and wanes.
If I am patient, spring changes come again.
Candace Barnes has been writing poetry since she was a child, finding solace in putting her private struggles into poetry. Barnes is the author of two books, one of which, Journey from Darkness, is an anthology of her poetry. She has lived in northern New Jersey for over 40 years, and has been diagnosed with chronic intestinal pseudo obstruction for 12 years. She is TPN (Total Parenteral Nutrition) reliant for the past five years, and enjoys reading and writing and getting out with her friends when she can.
The Choosing Wisely® campaign was launched in 2012 by the ABIM Foundation to encourage patients and clinicians to think about the tests and treatment choices they are implementing or requesting, and to avoid those tests that have proven to be overused and inappropriate.
Over the past three years, this initiative has engaged nearly 100 national and state medical specialty societies, regional health collaborative and consumer organizations. These organizations have identified more than 300 tests and procedures that must be scrutinized for their efficacy and efficiency before they are ordered.
In the Commonwealth of MA, Massachusetts Health Quality Partners (MHQP) is leading a multi-stakeholder effort to advance the Choosing Wisely campaign.
“The Massachusetts health care environment provides a fertile ground for Choosing Wisely to take hold,” said Barbra G. Rabson, executive director of MHQP. ” As a Commonwealth, we have made it a priority to find ways to achieve high quality and affordable care Choosing Wisely is another step in that direction.”
Created using Bitstrips. Text engine: Up Goer Five, “Can you explain a hard idea using only the ten hundred most used words? It’s not very easy.”
Bottom line: When you go to the doctor, any doctor, always ask for your records. Ideally, electronic versions of your records that you can look at, download to your own device (computer, phone, tablet), and share with your care team and your family.
Friday’s New York Times, page A30, carried an editorial Roadblocks to Sharing Medical Records, about the report ONC sent to Congress last week. (Congress had asked for the report. See our post Monday.)
This is serious stuff, folks – the report said whoever it is (unnamed, so far) is “knowingly interfering” with the exchange of health information. That means they’re preventing patient records from reaching other people who might need them. As the Times editorial and the report say, it appears to be for business reasons, i.e. for their benefit, to the detriment of patient care.
And in my view personally, this has to be somehow connected with the rule change proposed a week ago, in which lobbyists are saying providers shouldn’t be required to make it easy for all of us to get our information. That’s the #NoMUwithoutMe campaign, that we posted Thursday.
The Times had a feature article last November, Medical Records: Top Secret. Here’s hoping we continue to see growing media coverage – this is serious stuff. Remember: No doctor can do what they’re trained to, if they don’t have the facts.
Restricting flow of patient information
is not a valid playground
for private business interests.
If you want to do that, go find some other industry.
Several edits made, 1-2pm
There is a movement underway – a movement for patient liberation and autonomy – and the empire is striking back, interfering with our efforts. We – the whole movement, not just SPM – need your help.
If you’re in a hurry, skip down to the Do this first section. But come back and learn more about why this matters.
What’s at issue
A proposed rule change from Federal regulators would reduce the requirement for healthcare providers (hospitals and doctors) to share and have us use our medical information that’s in their computers. In short, these people have told regulators that it’s too hard, and they want to get paid without making data sharing a reality. For more information, see our post Monday.
What’s this “MU”?
According to a new study in JAMA, data breaches into people’s protected health information (PHI) records are increasing: “[The] study that found almost 30 million health records nationwide were involved in criminal theft, malicious hacking or other data breaches over four years,” notes the AP reporting on the study.
That’s a lot of data theft. Previous researchers supposed the data stealing is occurring primarily for identity theft reasons, or for medical identity theft (a specialized kind of identity theft that, in one common scenario, allows criminals to profit off of fraudulent billings to Medicare).
But the numbers still pale in comparison to credit card thefts — an ecosystem predicated on the very idea of security for the past five decades. In fact, despite spending countless millions of dollars a year to try and stop such hacking and fraudulent activity, the credit card industry has suffered from spectacular failures in the past few years.
Proposed rule change will *reverse* data sharing requirements; Regina & Farzad call for “National Day of Action” to fight back
Friday evening I got a tweet from SPM member Sherry Reynolds about something that had just happened in Washington. Today it unfolded. (Don’t miss her comment, too, about the history of this issue and her role in it.)
Change can provoke upset. Technological change can be hard, especially in an industry that’s not known for its IT leadership. And social change can be upsetting to the point of the establishment fighting back … as people in the civil rights movement learned. (The recent movie “Selma” makes all this fresh in many people’s minds.)
To some observers of health IT, it appears the establishment is indeed fighting back – actively, through its lobbyists – to reverse the progress patient activists have made. And it looks like things are coming to a head, right now, at the huge HIMSS health IT conference just starting in Chicago.
First, watch this two minute hallway video of SPM member Regina Holliday Sunday night, responding to that Friday news item.
Many of us in the Society for Participatory Medicine have long noted that what we’re up to here is nothing less than full-bore culture change. In my own speeches I often note that culture is the set of shared beliefs about what’s possible and expectations about what’s appropriate behavior. And culture change ain’t easy, no matter how great your strategy is: many change agents have quoted the famous management consultant Peter Drucker’s line, “Culture eats strategy for breakfast.” (Google the phrase to see how often it’s cited.)
Predictably, arguments and even spitting contests break out about this: is change happening, or not? Is anyone doing anything that will make any difference, or not? Today one such dispute has shown up in our Journal of Participatory Medicine (JoPM): SPM board member Peter Elias MD has taken to task Paul Levy, the former CEO of Beth Israel Deaconess in Boston, who is very patient-oriented (but not a member of SPM). In January Paul posted Lightning Goes to Ground on his blog, asserting that something big is missing in patients’ efforts to truly change healthcare:
SPM survey in Times Square: “Americans believe their medical data should be shared with their providers”
National Survey Also Shows 87% Think Health Information Exchange Should be Free
First paragraph updated next day
In case you missed it last month, there was an unprecedented, huge moment in SPM’s history – we collaborated in a national survey of Americans’ views and wants regarding something we at SPM hold dear: getting doctors to make full use of our chart data, by sharing it with other providers. SPM board member Donna Cryer @DCPatient and Danny Sands @DrDannySands collaborated with survey firm ORC International, and boy do the results say it: Americans want their medical data to be put to good use!
Back then we published a press release (below). Our survey partner ORC International also produced a gorgeous infographic (below), and hot diggety, it was picked up and published on the jumbotron in Times Square! (Photo, left. We also posted it on the SPM site, but haven’t blogged about it til now.)
There are some pretty stunning numbers in the survey results, and some pretty potent quotes. I’ll highlight some of them below.
Enjoy – and tell friends and tell your legislators! (How often does a legislator see survey numbers like 75% and 87%??) Tell them: current business practices and federal policy are holding back what Americans overwhelmingly want:
Let my data go!
The survey results and press release: