My daughter did something interesting a couple of weeks ago when we went to her pediatrician’s office. We asked for her records, and she told the clerk to make sure she was listed as being an e-Patient. “Check the box for e-Patient” she said. She’s fourteen.

I wondered, if providers actually would do that, what it would mean to them and to her.

I got to thinking about what it would mean, and realized that anything it could mean should apply to any patient, not just a self-declared e-Patient, but hear me out.

Is there some way we can create a movement where patients can say to providers: “I want to be enaged in my care, help me to do so. Give me access to information that I can use to help me stay healthier?”

Think of it like Blue Button, but instead, using a different metaphor: Check the Box… mark me down as an e-Patient. If providers see enough people doing that, they might realize that there is a demand for truly better care. And they aren’t totally dumb. They’ll eventually figure it out that what applies for e-Patients is how they should treat all patients. If we make it that easy for patients to tell their providers they want to be engaged, wouldn’t many just do it?

My observations:

WOOT!  (For those of a certain crusty age, that translates to “Far out!!  Right one!”  But with more glee to it.)

(For super-crusties, think “23 skedoo!” or “Solid, Jackson!”)

Seriously, though, it’s great that people are moving beyond “Okay, I get it” and are now onto “Okay, how do we do this?”  I spoke recently at the annual wellness fair of Rich Products, an employer in the Buffalo area, and they asked for specific, concrete takeaways – good ol “action items.” So I posted this on my personal site:

The Magic Incantation (introducing yourself as an e-patient):

Here’s what I say when I meet a new clinician, to explain my appetite for understanding:

“I’m the kind of patient
who likes to understand
as much as I can
about my health.”

“Could I ask some questions?”

Shazam: you’re an e-patient! Empowered, engaged, equipped, enabled.

And then these starter questions, as the situation requires:

When you or your family encounter a diagnosis, here are some basic questions to use:

1. How can I learn about my condition?
   • Good websites or pamphlets?
2. What are my options?
   • How much does this cost? See note below.
   • Are there any other options?
   • Do other doctors offer anything else?
3. What are the risks?
4. How strong is the evidence?
5. Can I connect with other patients?

Don’t worry, these questions aren’t rude! By asking them you’re being a responsible, activated, engaged patient. That’s great, because throughout medicine one of the most widespread complaints is about patients who aren’t engaged.

Note about the cost question: Caution: most providers don’t know, so don’t be rude. But you sure can ask, and keep asking!

• If they say “We don’t know,” ask “How can I find out? Whom can I ask?”
• If they say “Don’t worry, insurance will cover it,” say “I know, but my insurance is too high – I care about costs. What does this cost?”

Why is this important? Because time after time when I go out and give a speech, I hear people say “This stuff is fine, but patients don’t care: my patients never ask about this.” Yippee: that puts the power in your hands! Ask!

If enough people do it, they might think it’s a revolution!

And be sure to say this great line: “Check the box for e-Patient.”

Guest post from Cameron Neylon. Cameron is the incoming Advocacy Director at PLoS and a biophysics researcher based in the UK.

The US Executive branch has been taking a close look at the issues of public access to publicly funded research for some time now. There is a short term opportunity to influence the federal government to take real action on delivering public access to the published outputs of publicly funded research.

We’re asking for about five minutes of your time to sign the Access2Research petition on the White House site.

Sign the petition to require free access over the Internet to journal articles arising from taxpayer-funded research. This will require you to create an account at the White House petition website, confirm the account by clicking on a link in your email, and then sign the petition itself.

25,000 signatures in 30 days gets an official Administration response. We want to hit that number – blow it out of the water – to escalate this issue inside the White House. We believe the idea of requiring free access has support but is stuck. This could well be the event that gets it through.

As a patient or patient advocate you may be wondering whether this petition is really for you. After all the NIH mandate does a pretty good job of getting you access to the research you need.

There are three good reasons why this petition still matters for patients and their supporters.

1) There is much health research carried out beyond the NIH by other US Federal agencies. A lot of the basic research on biology relevant to disease is funded by theNational Science Foundation. Much of the important structural work that underpins drug design and optimisation is carried out at National Laboratories funded by the Department Of Energy. Indeed, the Human Genome Project began in the DoE. And a lot of the most important research lies between these different areas, funded by multiple agencies. A global mandate will ensure that the research critical for the health of you or your family doesn’t slip between the policy cracks between agencies.

2) Patients are the exemplar par excellence of the empowered citizen. If everyone is a patient, everyone is also concerned about the other big issues facing us today that can be informed by access to scientific information: energy; the environment; and the creation of jobs. Patients as a group have an opportunity to show the rest of the community what can be achieved when they are able to engage with high quality research information.

3) Research is a global enterprise. The majority of research relevant to your health is done outside the United Statues. Although the petition is a US action it will greatly help open access advocates to build momentum globally that means better access to all research, regardless of where it was carried out. The UK science minister recently described the need for coordinated global action as a major challenge in expanding access. A strong message from US patient advocates will make it easier to achieve global access.

But the real reason the petition is a patient issue is that this is just one round. This action is important for the NIH mandate in two ways. First by taking the policy ratchet one step further we protect the NIH mandate from any future actions that seek to roll it back, such as the Research Works Act. Secondly by demonstrating the power and depth of public opinion we are in a much better position to take the argument for public access to policy makers globally. We won’t win that in this round, but by winning this round we put ourselves in a much stronger position for the next one.

http://www.ihealthbeat.org/perspectives/2012/a-look-at-social-media-in-health-care-two-years-later.aspx

Guest post from SPM member Adrian Gropper, MD of HealthURL.com.

Information is the foundation for patient engagement. Nothing about me without me. Although personal medical information starts out with your various institutions and doctors, it doesn’t just stay with them. The information moves and collects in secondary locations such as insurers (claims), public health agencies (vaccinations), online health records (Microsoft HealthVault), exchanges (master patient indexes) and regulatory registries (narcotics and all payer claims databases).

These aggregators of personal medical information may not be directly involved in patient care today but they are increasingly important as a convenient perspective into our fragmented healthcare delivery, a guide to reducing our insurance and out-of-pocket costs, and a convenient way to monitor both fraud and accidental errors. All too often, because healthcare providers are distressingly reluctant to share information with patients, these aggregators are also the best source of primary information. What better way do I have to know what care my mom might be getting than to download her BlueButton file from Medicare?

The patient’s right to access, ideally convenient access, to aggregators of personal medical information is not guaranteed. It’s actually a shell game between federal (HIPAA) and state privacy regulations where, as with most shell games, the patient usually loses.

All Payer Claims Databases (APCD) are a good example. Price transparency is almost unknown in US health care and a major impediment to patient engagement even as family healthcare costs cross $20,000 per year. State regulators eager to cut Medicaid and private insurance costs set up databases to inform policy decisions but, for political and technical convenience, make that data inaccessible to the patient themselves. Is this fair? Is it legal?

The legal situation situation is murky. APCDs point to HIPAA when it’s convenient even though HIPAA was designed to protect primary data sources such as hospitals and insurance companies that have a direct relationship with the patient. At the state level, privacy regulations are all over the map with powerful providers, insurers, agencies and special interest groups drowning out the common patient and family perspective.

Federal health care reform efforts are trying to do what they can. The recent ONC initiative on governance of entities connected to the evolving nationwide health information network seeks input on future regulations that could strengthen HIPAA and clarify the fairness and legal issues around state and commercial information aggregators.

Patient input into regulation is critical to the evolution of APCDs, the effectiveness of health insurance exchanges, the sustainability of health information exchanges and the ability of commercial services to innovate in support of real-world patient engagement. I posted some e-patient highlights here to get you going. Keep in mind that state-level efforts are arguably more important than federal ones.

It’s time for immediate, convenient and open authorization-enabled access to our personal medical information in all state and national projects.

Adrian Gropper, MD (Twitter @AGropper) is a patient-centered technology advocate and consults on health services strategy at HealthURL.com. He is driven by the vision of doctors and patients collaborating around shared health records. 

Hugo Campos was apologetic about postponing a scheduled interview with me two weeks ago. In a midday email he wrote, “Just had the biggest arrhythmia ever. I’m trying to recover from the scare. I might go into the ER. I’ll keep you posted.”

Apt timing, I guess, because it illustrated, more than any mere rationale could have, the impact this situation has on a patient. As we documented here from Hugo’s live tweet stream, he was pretty nervous, and it took 3.5 hours for the ICD maker’s representative to show up and “interrogate” the device to find out what happened.

Tell me, please, someone, why on earth the vendor doesn’t want him to be able to do this himself.

Health FOO is a by-invitation “unconference” from O’Reilly Media and Robert Wood Johnson Foundation this weekend at Microsoft’s development center in Cambridge, MA.  SPM members I’ve seen so far include past president and founder Alan Greene MD, founder and ACOR founder Gilles Frydman, Marya Zilberberg MD, and Lygeia Ricciardi (Consumer Engagement guru at HHS)… others of you, ping me and I’ll add you here – wonderfully, we now have more members than I know!

Here’s the full transcript and analytics on Symplur’s Healthcare Hashtags project.  As a subset of that, here’s my hand-picked Storify feed – things I find interesting, in no particular order.  (If you get this in RSS or email and can’t see it, click to come online.) I’ll be updating it as we go along, so come back and refresh later.

p.s. Sometimes the feed takes a while to update here – you can always see the latest here on Storify.com.

http://www.meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/

An extract of the post below:

I am now vowing to dedicate my own career to educating as many people about MSA as possible and about the danger of uncoordinated care and poorly designed workflows. Interestingly, one of the last stories I wrote before my father passed and before I took leave was a piece in InformationWeek about patient engagement. I love the mantra of the Society for Participatory Medicine that I mentioned in the story: “Nothing about me without me.”

We send our condolences to Neil and thank him for writing about the Society for Participatory Medicine and our Meaningful Use Stage 2 comments in his Information Week article.

Hugo, meanwhile, would prefer to understand what‘s happening in his heart so he can avoid episodes. (Imagine someone preferring to stay out of medical trouble, instead of being rescued.)

And when something happens, large or small, he’d like to know what, so he can understand his body and do everything in his power to live in a way that works well for him. That’s why, for instance, despite the vendor’s lack of cooperation, he created a little self-tracking form (as described in his excellent 8 minute TEDx talk) and figured out that scotch whiskey gives him atrial fibrillation.

Without the vendor’s help.

So now he doesn’t drink scotch.

Well, yesterday around noon PT, Hugo had an arrhythmia that made his heart go wonky for a full twenty seconds. It was Not Pleasant – imagine your heart (with known problems) going crazy in a way that doesn’t stop – yet his device didn’t say a thing. (Addition 5/11: as Hugo explained in a comment below, the device did in fact respond, probably saving his life, but he had no way of knowing – it gave him no indication.)

He called 911, then felt better, so he got himself driven to the ER.  He has high deductible insurance. He live tweeted it; here’s a Storify capture. He’s fine today, but note the delays and things that could have been catastrophic.

Why can’t he have his data? Why does someone else have to come visit to “interrogate” the device, i.e. get the data out of it? What if the delay had caused preventable harm?

Here’s the storify feed of the tweets: (We’ve had some trouble with the code not working, so if you can’t see tweets below, click here to see it on Storify.com)

Interestingly, on Monday the vendor’s PR account had happily tweeted: “We’ve developed systems 2 help connect patients, drs & manage chronic disease. Learn more about #MDTs CareLink systems.” The next day Hugo replied:

That’s nice. Too bad patients can’t access the data you collect from our implantable devices. #MDTs CareLink #FAIL

And the next day, he had his episode. Quite a portent, eh?

SPM member Brian Ahier is Health IT Evangelist at Mid-Columbia Medical Center in The Dalles, Oregon. Today he posted this on Google+; reposted here with permission: (emphasis added)

First, I want to say that I am strongly opposed to the AHA’s misguided opinion on 42 CFR § 495.6(d)(12)(i) and (ii); 495.6(j)(10)(i) and (ii) – “Provide patients the ability to view online, download, and transmit their health information within four business days of the information being available to EPs.” I actually view the four business day requirement as a bit weak…

Patients should have real time access to their health information. They should not only be able to view, download, transmit or do anything they want with their record at any time, but have the opportunity to write their own notes as well. Planetree hospitals have been doing this for years! It’s called being patient-centered…

He links to his own post on this – from 2009:

Healthcare, Technology & Government 2.0: Transparency With Patient Data

It includes this, from a book co-authored by Planetree founder Susan Frampton:

“The Planetree philosophy stresses that one of the most valuable learning resources available was the patient’s own medical chart. Patients were encouraged to read their charts daily, ask questions and discuss findings, and participate in the decisions affecting their care. Patients were also encouraged to keep written records of their experiences and observations in Patient Progress Notes, which became a permanent part of their medical chart if they so desired.”

Putting Patients First

by Susan Frampton, Ph.D. and Patrick Charmel

Planetree’s a great organization, if you don’t know them. Check ‘em out.

Edit note: the title of this post originally said “Planetree hospitals already do it.” The body of the post was unambiguous about “do it” (real-time access to the record) but the title wasn’t, so after talking with Brian I changed it.

How slowly culture changes.

In September 2009, at the founding of our Society for Participatory Medicine, the cover of Health Leaders magazine said the e-patient was The Patient of the Future. It was a great, in-depth article with subtitles like “Technology connects patients and providers,” and Access to EHRs creates engaged patients.

Their readers may not be such leaders. Two years later (10/09) the cover said “Engaging the Patient,” yet its opening spread Treating Patient as Partner led with this report on readers’ current attitudes:

In our annual Industry Survey, leaders cite patient noncompliance and lack of responsibility as the fifth-greatest driver of healthcare costs at their organizations. … What do healthcare leaders need to do to effectively engage patients and get them to become responsible healthcare partners?

How about giving us information and welcoming our efforts to engage? We know not all patients are actively engaged – look at your reaction when we try.

How ironic that the American Hospital Association now advocates for delaying our access to our records for 30 days – even as they face new penalties if patients’ health fails and they go back in within those same 30 days.

Millenson’s post

SPM members are among the discussion leaders on the AHA’s proposal. Some links and a comment:

• On Wednesday Regina Holliday posted Lives not Livelihoods in Meaningful Use, a powerfully reasoned post and slide show (illustrated, of course) on how health policy must focus on benefitting and enabling the sufferers – the patients – not the vendors who make money whether our family member lives or dies.
• On Friday she posted Rally with Us in Support of Patient Data Access May 6th!, announcing a Washington rally from 2-6pm today outside the annual meeting of the American Hospital Association.
• Yesterday on THCB (The Health Care Blog) Michael Millenson MD posted Will Regina Holliday Become Health Care’s Rosa Parks?  He says that while today’s rally “is not quite the same magnitude as agitating for integration in 1950s-era Alabama … there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions.

Regina illustrated the clarity of her vision and the power of her expression in this exchange with a commenter:

JefferyG says:

All you have to do is get your care at Kaiser – they give patients access to their records.. I think one of Regina’s said that she does in fact belong to Kaiser now?

Shop with your feet instead of asking govt to mandate something if you want real change.

Regina Holliday says:

Dear Jeffery,

Yes, I went to KP after my husband died. If I go to get a check up I have limited data access. Even in KP you do not get doctor’s progress notes or nurses progress notes.

But if I go to the hospital, it would be a KP approved facility not a KP facility. The Meaningful Use Stage One regulations would be my only only legal recourse to get access to my records in a more timely fashion than 21 days.

Meaningful Use Stage One gives us access within 4 days. As we comment on stage 2, many of us are asking for access within 24 hours. If it is in our record we should be able to read it. There are so many ways we could aid in the care model with access to that information.

As far as voting with one’s feet, that is a mighty long walk for most of America. KP has a strong presence on the West Coast, but elsewhere their coverage is sparse.

If I apply Michael’s analogy to your statement it would be, “Why didn’t Rosa Park just move New York where she could sit on any seat in any bus?”

Sometimes we need laws to support us in our attempt to treat our fellow man with dignity and respect wherever they live in our fair country.

Reflecting on other movements

Lately I’ve come to realize an aspect of paternal medicine (regardless of whether it’s well intended) that’s subtle and, I think, perverse: in many domains, we keep patients separate from knowledge, then justify it by noting how ill-informed they are. Isn’t that a bit sick?

And this post makes me think back to the Sixties, when I saw exactly that reasoning applied to blacks. And women, now that I think of it.

How many times did I hear a man say “Don’t you worry your pretty head about that”? Or Todd Rundgren’s offensive 1970 lyric in “We Gotta Get You a Woman”: “They may be stupid but they sure are fun.”

I think Regina hits the nail on the head. The question ought not to be “What are you people complaining about? Aren’t you asking a bit much?” Rather, we should focus on whether people in need are at least being allowed to help themselves – and we really ought to ask if we’re somehow suppressing people, even if we don’t mean to be.

For a deeper dive into this thinking, read Sarah Greene’s post here, three years ago this week: Participatory Medicine as Revolution: Think Critically! Communicate! It cites the book Pedagogy of the Oppressed.

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

• This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
• Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

• Our manifesto: the e-Patient White Paper (PDF), in English and Spanish
• The Society’s member list, board and officers, and member listserv archives (open access)
• Our founders
• Guidelines for submitting guest posts about participatory medicine, for this blog
• Author guidelines for submissions to the Journal of Participatory Medicine
• Wikipedia pages for participatory medicine and e-patient

Contact us:

• Volunteering: volunteer@participatorymedicine.org
• Blog: blog@participatorymedicine.org
• General information: info@participatorymedicine.org

• You too can submit your opinion on the official public comment site. They even allow uploading attachments.
• As I just told a friend on Facebook: “How often, before this administration, did Washington make it truly easy for anyone to tell their story, from home? This administration is really open to this, and I have it on close first-hand authority that they actually read every one of these things, and the people in charge making the rules actually do care.”
• Participate!
• At bottom, I listed my personal highlights from these two short letters.

From David Harlow JD MPH, policy chair for our Society for Participatory Medicine:

Click to open letter to CMS (PDF, 183k)

Click to open letter to ONC (PDF, 183k)

I’ve uploaded SPM’s comment letters for Meaningful Use Stage 2 regulations, one for the Medicare/Medicaid regulations, one for ONC. Each letter opens like this:
____________

The Society for Participatory Medicine applauds the work done to date in focusing on patient engagement in the proposed Stage 2 Meaningful Use regulations and the proposed Health IT Standards regulations.  It is our hope that the final requirements will be even stronger and more focused in this regard than the current drafts. As set forth in greater detail in the attached letter, we have a number of comments that we believe will improve the regulations and their use as a lever to improve patient experience, patient engagement, patient care and, ultimately, patient outcomes. We would like to highlight two in particular:

• We favor improving the likelihood that patients will access their data by allowing for some automation of the process of accessing and downloading patient data, using existing technologies that protect patient privacy and security.
• We also favor immediate patient access to information in the patient’s electronic health record – unless the patient has elected otherwise.

The overarching principle with respect to patient access to electronic health record data running through the entire meaningful use regulation and the health IT standards regulation should be:

“Nothing about me without me.”

The Society for Participatory Medicine has individual and institutional members nationwide and has a governing board comprised of both clinicians and patients. It was founded to study and promote participatory medicine, which we define as being centered on networked patients shifting from being mere passengers to responsible drivers of their health, and providers who encourage and value them as full partners. For further background on the Society and its activities, we invite you to see the Society’s website (http://participatorymedicine.org), its online journal, The Journal of Participatory Medicine (http://jopm.org) and its blog, e-patients.net.
____________

Thanks to everyone who helped put these together and review them on behalf of S4PM.

David Harlow, J.D. MPH, Chair, Public Policy Committee
Daniel Z. Sands, M.D. MPH, SPM President

================

Highlights, in my view – notes added later in the day (from Dave; emphasis added):

The letter to CMS (Medicare & Medicaid):

• “Information should be available to the patient and patents’ designees as soon as it is available to any clinical user of the CEHRT other than the author of the information itself.” Yes: what rationale is there for disallowing this??
• “A patient should have the ability to waive the right of access; a provider should not have the right to limit it.” Brilliantly said.
• “…the delays allowed under the proposed rules must be eliminated. Earlier access is technologically feasible, and there are other forces at work in the health care economy motivating providers to finalize these records accurately and completely as soon as possible. Once the records exist and are available to other clinicians via the CEHRT, there is no reason why an engaged patient should not have the ability to access them as well.” Brilliant!
• “…the proposed 10% threshold for patient engagement via PHR portals will not be easily attainable. The government is in a position to mandate or recommend pathways to improve the usability of patient portals, thereby easing the ability of eligible providers to meet a higher threshold of patient engagement … With convenient secure access for patient advocates and on-line services, usability would improve, and meeting the 10% threshold will be made easier.” Okay, I’m getting tired of saying “Brilliant.” So well said!
• “we would like to stress the importance of making the data available to patients in a way that would also enable the patient’s automated agents to access the data on their behalf, therefore making it much more likely that more patients would access EHR data online. The manual steps required in many PHR environments are in part responsible for the limited adoption of these potentially valuable tools.”
• Yes, yes, yes! Every other industry knows, simpler stuff gets done more! And within e-health, we’re already seeing that passive / automated measurements get executed more reliably: Fitbit pedometers that upload their data automatically, Withings wifi bathroom scales and blood pressure cuffs, etc etc.
• “Most important, however, is making sure that those patients who want their data as soon as it is available in the EHR (i.e., with no delay) have that option.”

The letter to ONC:

• “… patients should have access to [all] the same [data] documents … as physicians and institutional providers. … patients and their family members or other designees should have the ability to review this information in real time — in order to serve as an additional check on accuracy, and in order to promote the broader goals of patient-centeredness.”
• “We recommend that “transmit to third party” also support widely available and secure protocols, such as the OAuth protocol … This will enable the patient to avoid inconvenience, delay and errors by providing to third parties limited access to the same information the patient can view and download.” Note the emphasis on how patients can help improve quality and reduce errors.  I would like to talk, personally, with anyone who opposes this goal.
• For diagnostic imaging: “…stream-capable hyperlinks to images that can be viewed in a typical web browser …
• “…without the delay related to use of DICOM file transfer [these files are huge]…
• “…and without the requirement to install additional software beyond the standard web browser itself.” [The more plugins you require, the fewer people will be able to do it, and the more compatibility problems you run into.]
• “These links should be secure and accessible not only to clinicians, as the proposed rule would have it, but to patients and patients’ agents as well.”
• Notice: the proposed rule says clinicians should have that, but patients don’t need it. SPM says, let patients engage with the information! I well remember when my primary (Dr. Sands) told me (9 a.m., January 3, 2007) there was something in my lung… he could see the image, at his home, and I hungered to see it too.
• Note also that the last I heard (two years ago), my hospital was planning to only offer lower-res jpegs online, not the full diagnostic quality images the clinicians see. That’s disempowering and disabling. (I hope they’ve changed their view since then.)
• “… patient educational material needs to be …
• “provided digitally and free of charge,
• “actually delivered and not simply identified via a search function within the EHR.”
• This is vital – one of the key objections I hear to patient engagement is “Most people aren’t smart enough – can’t do anything more than Google, and some can’t even do that.” To enable and engage patients, let’s GIVE the families the info they need, not say “You can go search for it if you want to.”
• I personally would urge that each article have a “like / don’t like” thumbs up-down rating, too, so providers can find out whether patients are actually benefitting.
• Among other things, this would give incentives to developers to provide higher-rated user-friendly materials, eh?
• “… free of any advertising …
• “produced either without sponsorship by parties with conflicts, or with full editorial control vested in the authors, not the sponsors.”
• This is so important – one of the first red flags about bad quality internet info is if the website is sponsored by a commercial party.
• “A way for patients to review e-prescriptions and participate in medication reconciliations with both their doctors and pharmacists via the patient portal. … will provide additional protections to patients with the ability to compare/confirm drug formularies and will eliminate paper waste and legibility issues.”

Would you please put me in touch with people in your network who are offering personal health records (or patient portals) to individuals dealing with chronic disease to empower them and help them with the self-management of their disease? I would like to ask them if they can invite their patients to take an online ANONYMOUS survey about “Personal Health Records and Chronic Disease” which was developed as part of my doctoral thesis?

Most of the questions are about PHRs, but it's within the context of researching how to manage chronic conditions, and a few questions later on are specifically about chronic conditions.

The survey is long, and most of the questions are about PHRs and online access. But it's within the context of researching how to manage chronic conditions, and a few questions later on are specifically about chronic conditions.
Here's the request, specifically:
=========
Please, help improve chronic disease prevention and care by taking an online ANONYMOUS survey about “Personal Health Records and Chronic Disease” at: http://ww3.unipark.de/uc/ca_hec_motreal_mireault_lehrstuh/5171/
Your participation would be greatly appreciated and may be beneficial for improving healthcare services for individuals with chronic disease… And do not hesitate to spread the word and invite people you may know to participate to the study.
Many Thanks!

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		e-Patient Dave
				
		

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			Cross-posted from the ICMCC blog, a post by its chairman, Lodewijk Bos, a Dutch cancer patient who is a great advocate for information, technology, and patient engagement. The ICMCC news feed is a terrific daily compilation of health IT news. 

A long-time advocate for patient empowerment – from his own experience beating unbeatable odds – Lodewijk is not happy with the position taken by the American Hospital Association to stall giving us our medical records.
AHA – Erlebnis ["epiphany"]
I am not a US citizen, so I can’t officially react to the latest news from the US patient access front nor put my opinion on the “protest page“. What is going on. First see this post from the Healthcare IT News and following see the post my friend e-Patient Dave wrote about it.

When Dave wrote me a short mail about it, I decided that I should write this post. First, I am president of a foundation that deals with the social, societal and ethical implications of computing and networking (Compunetics) in medicine and care. Second, the ICMCC foundation started it’s first internet appearance with the Record Access Portal we initiated in 2006 followed with a recommendation to the WHO on patient record access in 2007.
When I read the position of the AHA on patient record access I was shocked. I thought the original 4 days for delivering patients access was already a slow process, the now proposed 30 days are a gotspe [a grave insolence]. Unfortunately I have to generalize here (as Dave said in his post, “not all hospitals believe what the AHA letter says”), but the US hospitals are rushing to gather the incentives for implementing EHRs and now with as many words tell their patients they are not able to use them. If you use an EHR as intended, all patient data should be present in one, virtual, document, which should be available in its entirety within 24 hours. So that is why I already had problems with the 4 day term.
The fact that the AHA now says that it is not feasible to deliver in such a short notice and that they need 30 days is unbelievable. To quote Dave once more:
“Here’s what that means, specifically: when you or a relative is discharged from the hospital, instead of giving you your information promptly – to inform and empower good home care – they want to be allowed to spend that whole month gathering the information that might let you prevent readmission.”
With this the AHA admits that it does not know what an EHR was and is meant for – to gather patient information in an efficient way. It looks as if they try to find ways to stick to their old sense of ownership of the information, at the same time realizing they might be losing that battle and therefore extend the delivery time to enable themselves to avoid any possible tort processes.
It might be advised to read the Hoffman paper (E-Health Hazards: Provider Liability and Electronic Health Record Systems) from November 2009.
There is little I can do except writing this blog post and give my mental support to all who fight against the AHA position in this discussion.
Lodewijk Bos

President ICMCC


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		http://e-patients.net/archives/2012/05/important-oncnehc-webinar-noon-et-the-patients-role-in-ehr-data-quality-spm-speaking.html
		http://e-patients.net/archives/2012/05/important-oncnehc-webinar-noon-et-the-patients-role-in-ehr-data-quality-spm-speaking.html#comments
		Thu, 03 May 2012 13:29:30 +0000
		e-Patient Dave
				
		
		

		http://e-patients.net/?p=12191
		
			I should have announced this long ago but I’ve just been too busy for my own good. Go register now! FREE! Attendance is limited to 1,000. (It’ll be archived online of course.) Or click the graphic to register:


Why this matters: Data quality is important, and it’s not guaranteed.
As long-time readers (and members of our Society) know, the quality of the data in your medical record is important, and it’s often not well managed at all: it’s quite common for family to discover errors or omissions.  In some cases the mistakes can be lethal. The case for Patient Engagement is clear: do you know what’s in your record?  Someday a health worker may look in the record, and if the wrong info is there, harm could result.
You could say: the good news is, medicine is finally computerizing. The bad news is, there might be grit in the database. Time to get to work and clean it up!
Wonderfully, our current administration’s health IT people (ONC) get it, and are publicizing the issue.
One step is today’s webinar, “Keeping EHRs Error Free: The Value of Patient Engagement.” (I’m not sure I agree that “keeping” is the right word, but politics is politics – you know what you need to do!)  There’s a great roster of speakers:
FEATURING

Erin Poetter - Consumer e-Health Policy Analyst, Office of the National Coordinator for Health IT (ONC)
e-Patient Dave deBronkart - Patient Advocate, co-chair, Society for Participatory Medicine
Prashila Dbullah - Project Lead, NORC at the University of Chicago (“social science research that supports informed decision making”)
Norman K. Sondheimer - Co-Director of the Electronic Enterprise Institute (EEI), University of Massachusetts Amherst
Ethan Katsch* - Professor of Legal Studies and Director, Center for Information Technology and Dispute Resolution (CITDR)
Kenneth Mandl - Associate Professor at Harvard Medical School; Director of the Intelligent Health Laboratory at the Children’s Hospital Informatics Program

*See footnote at bottom about “Katsch”
I’m thrilled that ONC chose to start this webinar with the voice of SPM, to set the context for all that follows. Compare that to a few years ago, when the patient voice would be an afterthought if it appeared at all.
Ethan’s a particularly interesting guy, to me.  I first met him in 2009, when the news broke about the mess I found in my insurance billing history, which ended up on the front page of the Boston Globe. Ethan was (is?) a patient at the same hospital, and, fascinatingly, he was also a world leader of the project – in finance - to let consumers identify errors in their credit card statements.
And get them fixed.
So, if you look at online credit card statements, y’know the thing where it says “Inquire or dispute this item”? He led the work to define the global process for managing such inquiries: how you report them, how the data custodian has to respond, how it all gets resolved eventually.
Well, now the same work is starting regarding our medical records.  Considering the many people who’ve told me they can’t get their errors fixed, this will be important work!
During the prep for this I was also thrilled to learn that Children’s Hospital Boston (Ken Mandl) has been doing world-leading work to empower family feedback in maintaining the quality of the record.  For one thing, I didn’t know anyone was being this proactive about it. For another, I’ve been suspecting for more than a year that parents of sick children might be the most potent force for change in healthcare.
So, listen in live, or view the archive. It’s important work, both technically and culturally, and of course for patient safety.
— Oh, one more thing: unlike in finance, this is NOT just about the consumer’s rights to accurate data: this can seriously affect health workers, too. Have you ever had a situation in your job where somebody gave you wrong information, and something went wrong? Well, in healthcare that can cause a well trained person to cause harm, which is a horrible, horrible thing. Doctors and nurses deserve clean data, too.
Patients can help. Let patients help.

_______________
* About Ethan Katsch …  make that Katsh, no c.  How perfect that the announcement of a data quality webinar would contain a typo…. and Ethan says he never got around to having them fix it, so I pasted it in here – exactly the way errors get perpetuated in our medical records.
Ethan just learned again: fix it now, before someone passes it along to others. Bad data is an infectious disease.

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		http://e-patients.net/archives/2012/05/american-hospital-association-declares-war-on-patient-empowerment-please-act.html
		http://e-patients.net/archives/2012/05/american-hospital-association-declares-war-on-patient-empowerment-please-act.html#comments
		Wed, 02 May 2012 18:28:25 +0000
		e-Patient Dave
				
		
		

		http://e-patients.net/?p=12167
		
			[Reminder: The place to register an official comment to the government is this page on Regulations.gov. Monday May 7 is the last day.]

____________

New, 11pm ET on May 2: See Regina Holliday’s addition at bottom.
Evening addition: In a comment below, SPM policy chair David Harlow notes that (perhaps in addition to what you do below), to have your comments formally registered, you should submit them on the official Regulations.gov response page.

________________
The headline above is unusually strong wording, but emails and blogs have been ablaze today with outrage at the comment letter submitted Monday by the American Hospital Association regarding the proposed regulations for Meaningful Use Stage 2. The AHA has effectively said it is neither interested in, nor capable of, giving families the information they need to care for the sick after hospitalization.
And they say Federal rules should support their position. This would utterly disempower the efforts of patients and families to engage responsibly in their families’ care.
We must speak up. This is a call to action.
Perhaps the AHA has unwittingly revealed why American hospitals are inept at discharge planning: they don’t have a grip on this vital information. We already know that 20% of Medicare patients return to the hospital within a month (NEJM 2009). The industry describes this with the delightful term “bounceback.” Families call it upsetting, distressing, heartbreaking.
The issue at hand: current regulations for Meaningful Use Stage 1 (already in force) require that we be given our records within four days, but now the AHA says that’s impossible (“not feasible,” in their words) and they want thirty days.  A month.  (The iHealthBeat article links to the AHA’s 68 page letter (PDF).)
Here’s what that means, specifically: when you or a relative is discharged from the hospital, instead of giving you your information promptly – to inform and empower good home care – they want to be allowed to spend that whole month gathering the information that might let you prevent readmission.
Here are two leading organizations’ posts:

Center for Democracy & Technology (which happens to be the first organization ever to invite me to DC): Hospital Association Fights Digital Data Access for Patients
National Partnership for Women and Families: Don’t Let Them Destroy Patient Protections in Health IT!

Actions: For individuals, the fastest way is to use the response form on the National Partnership for Women and Families website, to send a message directly to HHS Secretary Sebelius: https://secure2.convio.net/npwf/site/Advocacy?cmd=display&page=UserAction&id=741.  The site will tally how many of us have spoken up. (See also the official HHS response page at top of this post.)
It’s quick: You can use their standard text – just fill in who you are, and you’re done.  It also offers a space to add your own. Here’s what I just submitted:
I am ENRAGED that American hospitals are so poorly organized that they request a “pass” on the vital task of giving families the information they need in order to care for the sick. Nothing could be more disempowering than to say “no” to a request for vitally important information.
It traumatizes and stresses a family – not to mention the patient – when a recently released patient deteriorates and must return to the hospital. It means the hospital failed to treat the patient successfully. Yet the AHA has resisted all past attempts to reduce failed discharges, which we euphemize as “readmissions.” It’s not a “readmission,” it’s FAILED CARE.
Now the AHA asserts that they don’t have it within their power to gather the information a family would need in order to do their part, at home.
This is unconscionable. American healthcare is the world’s most costly and is often far from effective. Give Us Our Damned Data – Let Patients Help!
Obviously there are exceptions – not all hospitals believe what the AHA letter says. But this situation calls for forceful language. We must stand up for ourselves, our children, our elders, or the forces of foot-dragging will have their way again, and we can’t afford it.
This is so ridiculous that in a discussion on the SPM member listserv, Health 2.0 co-founder Matthew Holt mocked the AHA, saying:
30 days, surely not enough time. How about 90?
Or how about releasing data only after the patient sends in their death certificate?
I think  by their weak demand [of "only" 30 days] the AHA shows they’re cowed  by our movement ….
Another said: “Absolutely shameful.  They should be embarrassed to be publicly taking this position.”  I’ve never heard stronger words from highly placed people.
Please, go to the form and add yourself to the number of letters to Sebelius. And to the official Regulations.gov page, to comment directly on the rule.
=======
Addition 11 pm ET:
SPM member Regina Holliday has just posted about this in a powerful new entry on her blog: Lives not Livelihoods in Meaningful Use. Please read it. Now.
It ends with the most potent slides I think I’ve ever seen on the urgency, the human impact, of these issues – not just the one issue here, but the entire arc of Stages 1, 2 and 3 of Meaningful Use. She is a gifted storyteller.
Long Stories: The Story Of Meaningful Use and Why the patient voice matters..  

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		http://e-patients.net/archives/2012/04/making-sense-of-patient-centered-care.html
		http://e-patients.net/archives/2012/04/making-sense-of-patient-centered-care.html#comments
		Mon, 30 Apr 2012 18:08:00 +0000
		Kathleen O'Malley
				
		
		
		

		http://e-patients.net/?p=12163
		
			The Journal of Participatory Medicine received a nice recommendation from Paul Levy, former CEO of Beth Israel Deaconess Medical Center, in his blogpost on where to find reliable information about patient-centered medicine. Levy also recommends a new non-profit site called uPrevent, which translates research findings into actionable information for patients. Read the post at http://www.golocalprov.com/health/paul-levy-how-to-become-a-more-informed-patient/.


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		http://e-patients.net/archives/2012/04/globe-article-on-emrs-status-and-the-safety-issue.html
		http://e-patients.net/archives/2012/04/globe-article-on-emrs-status-and-the-safety-issue.html#comments
		Mon, 30 Apr 2012 12:57:46 +0000
		e-Patient Dave
				
		
		
		

		http://e-patients.net/?p=12133
		
			
Wesley Bedrosian for the Boston Globe
In today’s Boston Globe, the cover story for the daily ”G” magazine is “Record-Keeping 2.0,” by Chelsea Conaboy (@cconaboy). Subtitled “Medical care is shifting to electronic data files – but how safe is it?”, it’s a good mass-market introduction to the subject and where we sit today. If your grandmother or neighbor wonders what all the fuss is about, this is a good place to start.
This matters, because it’s a complex and important subject with a lot of half-informed whining, but Conaboy gets it right.
Many observers have written accurately about some aspect but have gotten the big picture wrong. Instead, Conaboy leads with an on-target vignette of a local doctor with a complex patient, focusing the story on a real-world example of why EMRs are needed: complex chronic cases like this account for a large part of America’s world-”leading” health costs.
In the vignette, the doctor’s EMR system (electronic medical record) catches a potential medication conflict. She then tours the issue as it sits today – the federal stimulus bill that’s driving adoption of EMRs, last year’s Health Affairs coverage, and the controversy created last year by Dr. Danny McCormick’s much-criticized study that, in the end, made the point that we need to ask whether these systems are in fact good.
One way this affects patients is that some of the systems are really badly programmed – “crap,” as one hospital put it. (In 2010 we reported that a big L.A. hospital was extremely frustrated by how hard their system was to use, and even the replacement they chose was “the cream of the crap.” That’s their words, not mine.) When you or your mother or child is in the hospital, do you want your doctors and nurses to be stuck with a system like that?
In 2010, while the regulations were being debated on what the government would require of these systems, it was widely rumored that a powerful EMR executive refused to allow system usability to be a criterion, saying that would happen “over my dead body.” Nice.
Not.
I made that the title of a speech I gave that June: “Over My Dead Body: Why Reliable Systems Matter to Patients.” (Slides here; see slides 48-55. Video here; this segment starts at 34:10.)  But the vendor won: the resulting federal rules have no requirement that the systems be reliable or easy to use. So yes: safety is an issue that the public should be aware of.
Data quality is just as important, and not at all guaranteed: long-time readers will recall that three years ago my own medical record was discussed in a page 1 story in the Globe, because of a post on e-patients.net that discussed the many errors I found in my hospital’s insurance records. (A piece of software had foolishly assumed my insurance records would be a realistic picture of my medical history.)
Within weeks this led to the first invitations for SPM members to participate in policy meetings in Washington as the voice of the patient. I’m told that the testimony provided by several of us ended up as decisive voices for the Meaningful Use rules that require “patient and family engagement” – we the patients must be allowed to view our records, online … and report errors, and get them corrected.
This work continues, and it’ll be really, really important for patients to work together with their clinicians and vendors to get these systems to the level they need to achieve: safe, accurate, and easy to use. Conaboy’s article doesn’t specifically address the role of the patient, but it’s solid in everything it does cover, and on target.

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		http://e-patients.net/archives/2012/04/lets-get-medical-info-as-good-as-our-pets-get-a-petition.html
		http://e-patients.net/archives/2012/04/lets-get-medical-info-as-good-as-our-pets-get-a-petition.html#comments
		Thu, 26 Apr 2012 21:14:52 +0000
		Kathleen O'Malley
				
		
		
		
		

		http://e-patients.net/?p=12118
		
			SPM member Ken Farbstein sent us this invitation to help persuade the Office of the National Coordinator for Health Information Technology to include printed summaries of doctor visits in the ONC’s definition of meaningful use.

After our pets go to the veterinarian, many of us promptly and routinely get a paper summary that instructs us how to best care for them, i.e., treatment follow-up, diet, and specific healthy behaviors. We should get medical info from our own doctors that’s as good as our dogs and cats get! Sign the petition at http://signon.org/sign/lets-get-healthcare-as?source=c.url&r_by=290310.
     Human patients should receive a paper summary of their doctor’s orders for new medications, changes in medications, and the treatment plan, as they exit the doctor’s office. Many patients find it hard to remember everything a doctor tells them during the visit. Foreign language speakers; patients with dementia, memory and hearing problems; anxious patients; patients with multiple conditions and complex treatment plans; patients in denial about their alcohol or substance abuse, and many other patients often do not hear and retain everything a doctor advises them. Without clearly understanding all a doctor’s orders, patients are unlikely to act accordingly, which slows their recovery. It leads to unnecessary suffering. It may also lead to a greater likelihood of entering the hospital for costly care.
     For the vast majority of patients, including the elderly, and those lacking computer skills or internet access, a paper copy of the doctor’s orders in plain English will be more convenient than logging in to a seldom-used, password-protected electronic account on the Web. By default, patients should get a paper copy handed to them, or mailed immediately after the visit, unless they prefer an electronic copy.
     The Stage 2 and 3 definitions by the Office of the National Coordinator for Health Information Technology (ONC HIT) of “meaningful use” of an electronic health record in the patients’ eyes should require doctors to routinely hand a paper copy of the doctor’s orders to each patient as he or she leaves the doctor’s office, or mail it to the patient immediately afterward.
     Paper handouts are highly portable. The National Coordinator should adopt these ideas, which are provided in response to their specific requests on pages 136 and 89 of the proposed Federal rule (RIN 0991-AB82). These comments refer to Sections 170.314(e)(1) and 170.314(e)(2), as noted at 77 FR 13838-41 and 77 FR 13856-57.
     Let’s get healthcare as good as our dogs and cats get!  Join us by signing the petition at http://signon.org/sign/lets-get-healthcare-as?source=c.url&r_by=290310.
Ken Farbstein, MPP

President, Patient AdvoCare
http://www.PatientAdvoCare.com
Ilene Corina, President

PULSE of NY

www.pulseofny.org

Patient Safety Consultant / Advocate

www.patientsafetyconsultants.com
John T. James, Ph.D.

Editor, Patient Safety America Newsletter
http://PatientSafetyAmerica.com
Armando Nahum

President at Safe Care Campaign
http://www.safecarecampaign.org
Jean Rexford, Executive Director

Connecticut Center for Patient Safety
http://www.ctcps.org/
Trisha Torrey

Every Patient’s Advocate
www.EveryPatientsAdvocate.com
Nicola B Truppin

Principal

Health Navigator Partners, LLC
http://www.healthnavigatorpartners.com
Deb Wachenheim

Health Quality Manager

Health Care for All Massachusetts
http://www.hcfama.org

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