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.

• 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.”

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.

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.

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.

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.

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

The idea of the Walking Gallery is that among the people you see on the streets there are many medical stories, but they’re invisible. The Walking Gallery brings them out where we can see them. It makes the impact of healthcare visible. There were at least six Walking Gallery jackets at TEDMED, and they got attention.

I’ve heard Regina’s story, but now it’s in the Library of Congress. Click the image at right to go to Ted’s blog for the audio (play online, download, or send to iTunes). Or click here.

A year ago our long-time friend Ted Eytan MD, who has also long supported Regina, recorded a 42 minute interview with Regina for StoryCorps, the NPR audio project. It includes details I’d never heard of what it was like to be shoved aside and belittled by clinicians, to be given little information by clinicians while Fred was dying, to be left to herself to go home and google to find the information she needs.

It’s an important story, powerfully told, with good dialog between two smart, feeling friends.

(Regina’s post last year introducing the Walking Gallery is here. If you don’t know her, explore the rest of her blog.)

Today a Twitter exchange with SPM member @KatherineKLeon led to Deven (@HealthPrivacy) tweeting these resources:

• Getting Your Medical Records – CDT’s FAQ page about your rights
• This is a fabulous resource! Why have I never known about this? Tell friends!
• “Patients have a legal right to obtain and correct medical records about themselves, but many patients have reported difficulty in doing so. While health information technology can make it easier for patients to access and correct their data, patients still need to know the steps to take to obtain copies of their health records, what to do if a provider or plan refuses a request to obtain or correct a record, and how patients should protect their health records once they have them. The Center for Democracy & Technology (CDT) is releasing this Frequently Asked Questions page as a basic resource to help patients exercise their rights and protect their data.”
• Lamb Law Office’s Medical Records Copying Charges -
• “This web page lists the various state statutes that control the amount of money doctors, hospitals, and other health care providers can charge a patient for copies of their medical records …”  Concise summary of each state’s rules
• “Under the Health Insurance Portability and Accountability Act (HIPAA) a covered entity can only charge “reasonable” cost-based fees for providing the medical records to patients. See 45 CFR 164.524(c). Arguably, fees that are not cost-based, even if permitted by a state statute, may be contrary to the HIPAA regulation and therefore preempted by this federal regulation.
• Georgetown University’s Center on Medical Record Rights & Privacy
• “A federal law called the HIPAA Privacy Rule gives you the right to see, get a copy of and amend (correct) your medical record by adding information to it.”
• The right sidebar lists the states, with articles about each state’s rules, online or downloadable PDF

Update Saturday night: Additions from SPM member Trisha Torrey, from her site:

• How to approach your doctor, and how to get them for free:  http://patients.about.com/od/yourmedicalrecords/a/getmedrecords.htm
• Costs, and what to do if you can’t afford to pay for them:  http://patients.about.com/od/medicalcodes/f/How-Much-Does-It-Cost-To-Get-Copies-Of-Your-Medical-Records.htm
• And what to do if your doctor has gone out of practice:  http://patients.about.com/od/medicalcodes/a/How-To-Get-Your-Medical-Records-If-Your-Doctor-Is-No-Longer-In-Practice.htm

p.s. A historical note – it’s far less detailed, but in 2010 we posted Teaching HIPAA With a Seinfeld Episode, in which Elaine recruits Kramer to steal a copy of her records. Steal? Yes, it aired in October 1996, just after the HIPAA law was passed, but before the regulations gave us access rights.

Long-time SPM member Adrian Gropper MD, of HealthURL, has already digested the 450 pages and distilled it into the e-patient impact. He posted it to Google Docs, and agreed to let us cross-post it here. (Adrian is @AGropper on Twitter.)

First, his prolog, then his summary.
__________

My preliminary conclusion is that Stage 2 is a huge leap toward coordinated, patient-centered care and makes unprecedented efforts toward patient engagement.

By mandating comprehensive structured summaries be available to patients for download as well as on-line viewing, Stage 2 enables patient-directed health information exchange as an alternative to hidden provider-provider transactions that characterized earlier HIE efforts.

Although not mentioned by name, the implied use of Direct secure messaging for physician-physician and patient-physician communications will hopefully finally cause all EHRs to communicate with all other EHRs (and PHRs) without costly interfaces.

Also, new requirements for accessible imaging should eliminate the hassle of CDs for patients and doctors alike and make referrals and second opinions easier than ever.

All of these privacy, transparency and accessibility enhancements come none-too-soon as ACO payment reforms implicitly drive providers to keep patients in their particular network.

ABSTRACT

The following is a patient-focused abstract of the proposed Meaningful Use Stage 2 regulation. The text is verbatim but I’ve taken the liberty to snip out much of the detail except in three cases (imaging, online summary content, and messaging) that may not be intuitively obvious. EP refers to eligible providers. Objectives that do not specify providers vs. hospitals apply to both. I edited out some redundancy so please refer to the original document before you conclude that one or another is off the hook.

From the HHS Document:

• Proposed EP Objective: Provide clinical summaries for patients for each office visit.

• Proposed EP Measure: More than 10 percent of all unique patients who have had an office visit with the EP within the 24 months prior to the beginning of the EHR reporting period were sent a reminder, per patient preference.

• Proposed EP Objective: Provide patients the ability to view online, download, and transmit their health information within 4 business days of the information being available to the EP.

• Proposed Objective: Use clinically relevant information from Certified EHR Technology to identify patient-specific education resources and provide those resources to the patient.

• Proposed Objective: The EP, eligible hospital or CAH who transitions their patient to another setting of care or provider of care or refers their patient to another provider of care provides a summary care record for each transition of care or referral.

• Proposed Objective: Capability to submit electronic data to immunization registries or immunization information systems except where prohibited, and in accordance with applicable law and practice.

• Proposed Objective: Imaging results and information are accessible through Certified EHR Technology.

Making the image that results from diagnostic scans and accompanying information accessible through Certified EHR Technology increases the utility and efficiency of both the imaging technology and the CEHRT. The ability to share the results of imaging scans will likewise improve the efficiency of all health care providers and increase their ability to share information with their patients. This will reduce the cost and radiation exposure from tests that are repeated solely because a prior test is not available to the provider.

Most of the enabling steps to incorporating imaging relate to the certification of EHR technologies. As with the objective for incorporating lab results, we encourage the use of electronic exchange to incorporate imaging results into the Certified EHR Technology, but in absence of such exchange it is acceptable to manually add the image and accompanying information to Certified EHR Technology.

Proposed Measure: More than 40 percent of all scans and tests whose result is one or more images ordered by the EP or by an authorized provider of the eligible hospital or CAH for patients admitted to its inpatient or emergency department (POS 21 or 23) during the EHR reporting period are accessible through Certified EHR Technology.

For Stage 2, we do not propose the image or accompanying information (for example, radiation dose) be required to be structured data. Images and imaging results that are scanned into the Certified EHR Technology may be counted in the numerator of this measure. We define accessible as either incorporation of the image and accompanying information into Certified EHR Technology or an indication in Certified EHR Technology that the image and accompanying information are available for a given patient in another technology and a link to that image and accompanying information. Incorporation of the image means that the image and accompanying information is stored by the Certified EHR Technology. Meaningful use does not impose any additional retention requirements on the image. A link to the image and accompanying information means that a link to where the image and accompanying information is stored is available in Certified EHR Technology. This link must conform to the certification requirements associated with this objective in the ONC rule. We encourage comments on the necessary level of specification and what those specifications should be to define accessible and what constitutes a direct link.

• Proposed Objective: Record patient family health history as structured data

• Proposed EP Objective: Capability to identify and report cancer cases to a State cancer registry, except where prohibited, and in accordance with applicable law and practice.

• Proposed EP Objective: Capability to identify and report specific cases to a specialized registry (other than a cancer registry), except where prohibited, and in accordance with applicable law and practice.

• Proposed Eligible Hospital/CAH Measure: More than 50 percent of all unique patients 65 years old or older admitted to the eligible hospital’s or CAH’s inpatient department (POS 21) during the EHR reporting period have an indication of an advance directive status recorded as structured data.

• Proposed Eligible Hospital/CAH Objective: Provide patients the ability to view online, download, and transmit information about a hospital admission.

Studies have found that patients engaged with computer based information sources and decision support show improvement in quality of life indicators, patient satisfaction and health outcomes. (Ralston, Carrell, Reid, Anderson, Moran, & Hereford, 2007) (Gustafson, Hawkins, Bober, S, Graziano, & CL, 1999) (Riggio, Sorokin, Moxey, Mather, Gould, & Kane, 2009) (Gustafson, et al., 2001). In addition, this objective aligns with the FIPPs,3 in affording baseline privacy protections to individuals. We believe that this information is integral to the Partnership for Patents initiative and reducing hospital readmissions. While this objective does not require all of the information sources and decision support used in these studies, having a set of basic information available advances these initiatives. The ability to have this information online means it is always retrievable by the patient, while the download function ensures that the patient can take the information with them when secure internet access is not available. However, providers should be aware that while meaningful use is limited to the capabilities of CEHRT to provide online access, there may be patients who cannot access their EHRs electronically because of their disability. Additionally, other health information may not be accessible. Providers who are covered by civil rights laws must provide individuals with disabilities equal access to information and appropriate auxiliary aids and services as provided in the applicable statutes and regulations.

We propose this as a core objective for hospitals in Stage 2 with the following information that must be available as part of the objective:

●  Admit and discharge date and location.

●  Reason for hospitalization.

●  Providers of care during hospitalization.

●  Problem list maintained by the hospital on the patient.

●  Relevant past diagnoses known by the hospital.

●  Medication list maintained by the hospital on the patient (both current admission and historical).

●  Medication allergy list maintained by the hospital on the patient (both current admission and historical).

●  Vital signs at discharge.

●  Laboratory test results (available at time of discharge).

●  Care transition summary and plan for next provider of care (for transitions other than home).

●  Discharge instructions for patient, and

●  Demographics maintained by hospital (gender, race, ethnicity, date of birth, preferred language, smoking status). This is not intended to limit the information made available by the hospital. A hospital can make available additional information and still align with the objective.

A hospital has any number of ways to make this information available online.

The hospital can host a patient portal, contract with a vendor to host a patient portal, connect with an online PHR or other means. As long as the patient can view and download the information using a standard web browser and internet connection, the means is at the discretion of the hospital.

• Proposed EP Objective: Use secure electronic messaging to communicate with patients on relevant health information.

Electronic messaging (for example, e-mail) is one of the most widespread methods of communication for both businesses and individuals.  The inability to communicate through electronic messaging may hinder the provider-patient relationship. Electronic messaging is very inexpensive on a transactional basis and allows for communication even when the provider and patient are not available at the same moment in time.  The use of common email services and the security measures that may be used when they are sent may not be appropriate for the exchange of protected health information.  Therefore, the exchange of health information through electronic messaging requires additional security measures while maintaining its ease of use for communication.  While e-mail with the necessary safeguards is probably the most widely used method of electronic messaging, for the purposes of meeting this objective, secure electronic messaging could also occur through functionalities of patient portals, PHRs, or other stand-alone secure messaging applications.

We are proposing this as a core objective for EPs for Stage 2. The additional time made available for Stage 2 implementation makes possible the inclusion of some new objectives in the core set. We chose to identify objectives that address critical priorities of the country’s National Quality Strategy (NQS) (http://www.healthcare.gov/law/resources/reports/quality03212011a.html), with a focus on one for EPs and one for hospitals.

For EPs, secure electronic messaging is critically important to two NQS priorities-

• Ensuring that each person/family is engaged as partners in their care; and

• Promoting effective communication and coordination of care.

Secure messaging could make care more affordable by using more efficient communication vehicles when appropriate. Specifically, research demonstrates that secure messaging has been shown to improve patient adherence to treatment plans, which reduces readmission rates. Secure messaging has also been shown to increase patient satisfaction with their care. Secure messaging has been named as one of the top ranked features according to patients. Also, despite some trepidation, providers have seen a reduction in time responding to inquires and less time spent on the phone. We specifically seek comment on whether there may be special concerns with this objective in regards to behavioral health.

]]> http://e-patients.net/archives/2012/02/an-e-patient-perspective-on-stage-2-of-meaningful-use-adrian-gropper.html/feed 21 http://e-patients.net/archives/2012/02/the-debate-over-patient-access-to-lab-results-thcb-post-from-rwj.html http://e-patients.net/archives/2012/02/the-debate-over-patient-access-to-lab-results-thcb-post-from-rwj.html#comments Wed, 15 Feb 2012 17:03:31 +0000 e-Patient Dave http://e-patients.net/archives/2012/02/the-debate-over-patient-access-to-lab-results-thcb-post-from-rwj.html Over on The Health Care Blog, John Lumpkin MD posted a good essay about the proposed ONC rules to let patients automatically see their lab test results. The SGIM Forum (newsletter of the Society for General Internal Medicine) ran a debate about it, and Lumpkin comments.

Lumpkin is senior VP and director of Health Care Group at Robert Wood Johnson Foundation, whose Pioneer Portfolio does much good work studying patient engagement, including the OpenNotes project we’ve often discussed here, and they funded the e-Patient White Paper that’s our foundation document.

Man with defibrillator wants to know what his heart is saying

Photo: Laura A. Oda, San Jose Mercury News

Hugo Campos has a small computer buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart.

All the raw data it collects, especially any erratic rhythms it controls with shocks, goes directly to the manufacturer. And some of it later gets sent to his doctor.

But Campos had to step onto a national stage in his fight to see the data his body produces.

His David-and-Goliath campaign puts him on the leading edge of what’s called the “e-patient movement” — “engaged, equipped and enabled” — that seeks to harness data so patients can learn more about their bodies.

“It’s mine. I paid for it. It’s in my body,” asserts the tech-savvy 45-year-old, who since his sudden collapse at the Fruitvale BART station four years ago has devoted himself to studying cardiology textbooks, attending device symposiums and scheming how to access the electronics of his tiny defibrillator.

“I have a right to my own damn data,” he said. … (See Mercury News site for full text.) 

What better place for this story to land than in Silicon Valley’s premier newspaper?  Several of us have been saying for ages that it’ll be great when innovators can pounce on medical data streams and do something innovative with them – especially, make those streams into something we ordinary mortals can understand. Have at it, fellow geeks! (And writer Krieger clearly gets it about the significance of data streams.)

Fellow SPM member David Lee Scher, MD (@DLScherMD) is also quoted, with a perfect participatory perspective:

Campos’ campaign has a professional supporter.

“It is embarrassing to leave our patients in the dark, by design or technological necessity,” wrote Dr. David Lee Scher in his blog. The former cardiac electrophysiologist founded DLS Healthcare Consulting, which advises digital health companies.

He cautions that the data is very technical, even for physicians, and often irrelevant. He urges patients and physicians to work together on a solution.

And that perfectly spotlights the participatory medicine aspect:

Our Society’s definition of participatory medicine, at the top of the website, begins: “…a movement in which networked patients shift from being mere passengers to being responsible drivers of their health…”  When you listen to Hugo’s TEDx and NPR pieces, it comes through loud and clear: that’s exactly what he and his ICD User Group want to do. Be responsible.

But the next piece of the definition is what’s currently missing: “…and providers encourage and value them as full partners.” He’s asking for the device makers, too, to encourage and value him as a full partner – in saving his own life, for heaven’s sake.

On a cultural note, the article says he wrote new lyrics to a Sixties protest song by Malvina Reynolds, “It Isn’t Nice” – and last summer he blogged a YouTube of it. The lyrics won’t win a prize for grace and meter, but hey, folks, this is folk music – vox populi - the voice of the people! Are you listening??

For the full lyrics, see his ICD User Group blog.

And in case you haven’t heard Malvina’s original peppy civil rights protest song, here it is. Enjoy that good old twelve-string guitar.

Do I hear a “power to the people” blowin’ in the wind?

Remember, “patient” is not a third person word. Your time will come.

A conversation on the SPM listserve was started by Joleen Chambers, @JjrkCh, a patient advocate for patients with failed medical devices. Here’s her Failed Implant Device Blog. She made a plea to have our members support a petition on the ConsumersUnion site that would enable medical devices to be more heavily scrutinized by the FDA, and outlined the needs for a better tracking system of medical devices than which currently exists. This includes the ability to contact patients in the event of a device’s recall.

These are all critically important things to have in place. I have a vested interest because I happen to have a failed medical device.

The conversation broke out when Joleen’s reference’s were put to the test….in her email she mentioned “millions of medical devices” and at the recall rate of 700 per year. A list member shared a link from the FDA listing medical device recalls, whose numbers differed from Joleen’s, and there was much discussion of her assertion. I made the point that we, as patient advocates, need to be clear on our data to support our argument. Dubious data, with the correct intention or not, undermines our credibility as patient advocates. Others chimed in, producing a really engaging dialogue.

In a parallel universe, Hugo Campos, @HugoOC, a patient advocate, poses the question: Who owns the data from his implanted heart defibrillator, (an ICD)? because he has been struggling to get access to the raw data from his heart monitor, that collects a large number of data points around the heart and the clinical status of his body. Hear the podcast here, from on NPRs media.org, and his TEDx presentation. The manufacturers argue that he would not be able to understand the data. Hugo is a selfquantifier at heart (no pun intended). Through his own self monitoring activities, he learned that coffee and scotch whiskey were triggers for cardiac arrhythmias.

Joleen’s argument that we need to support an independent registry and better monitoring of medical devices is important for patients, as is my argument, that we should have the right to know what is implanted in us. (I have requested from my doctor the information on my hip implant parts without luck, so far. I have my operation report and associated medical records, and nowhere is there information on what parts were installed. Someone has to have this information somewhere…no?) This aligns with Hugo’s assertion that he (or any patient) should have access to the data that his implanted medical device is collecting and transmitting about him to some place somewhere. All these should be our patient rights.

The real underbelly of this issue, for me, is who has responsibility for when something goes wrong?

When there is an implant that has been recalled, what happens to us, patients? Who pays to fix it?

What if it is a critical function device, like a heart defibrillator? Who’s liable is hard to determine unless really obvious (as is in my case). What happens, as in my case, when 90% of my femoral bone has grown into a hip implant except the tip, (mind you it is quite an uncomfortable pain…like my leg is snapped at that point) and doctors are throwing around words like, “We will throw in someone else’s femur and wire bind it to yours”, or “We could try a controlled fracture of the femur and dig out the titanium stem and hope for the best.”

That is when I think “#WTF, what a mess!” I am the one living in pain, and no good solution, and I will be paying for the surgery, not the doctor (at least that is not how the system currently works as far as I know), and what is really irritating for me is that the reason why I am having an early hip replacement in the first place is because of a medication that I was given for a misdiagnosis. How’s that for a double whammy. (That’s a whole other story.)

The question remains: how is the medical machine positioned to manage these types of complications? What I do know is that recently in 2009, for orthopedic devices at least, the AAOS (the American Academy of Orthopedic Surgeons) has sponsored a implant registry to track devices. I have no idea how to access it, and I would really like to know if my problem is being tracked. I cannot even get the info from my doctor, which I am working on. Although, the AAOS does not list patients directly as a stakeholder, it does list patient advocates, and it does indicate that the registry should be transparent. I would really like to get some ortho’s response about the registry. With this post I will put out a tweet to my Ortho twitter list including: Howard Luks @HjLuks, Katherine Burns @KburnsMD, and Steve Mora, @myorthodoc among others.

I also think we as advocates need to reach out and partner, in the hopes of transparency, with groups like the AAOS to have at least ortho implants information available to the patient. Patients should be able to add their own experience of their device.

I think there is a fine line between what a doctor considers a failure and what a patient does. I think I would technically not be considered a failure, although I cannot walk very far without pain. I also think we need to support more stringent rules on how devices get to market and are monitored. As such I support Joleen’s legislative efforts and will add my name to her petition for better management of these devices.

Also, I think patients have an inalienable right to their own data. Ultimately, this is all about the same thing, which is being educated empowered engaged patients partnering to make healthcare better for each/all of us and more transparent.

Our man Hugo Campos (see Friday’s post) is becoming a media star! TEDx, then MIT Technology Review, now NPR’s ”On The Media”!

From SPM co-founder Joe Graedon, of People’s Pharmacy, on the SPM listserv – see also the items below …

———- Forwarded message ———-
From: Joe Graedon
Date: Sun, Jan 22, 2012 at 5:01 PM
Subject: Re: [SPM-MEMBERS] HUGO on “On The Media!”–LISTEN!!!
To: SPM-MEMBERS@lists.participatorymedicine.org

We just heard Hugo’s interview on “On The Media.”

It was FABULOUS! Hugo, great job mentioning e-Patients and explaining what it is all about.

Hugo has carried the banner beautifully.

Here is the link:
http://www.onthemedia.org/2012/jan/20/who-owns-data-inside-your-body/

And now….who is going to blog about this on e-patients?

Dave???

Joe & Terry

On Jan 22, 2012, at 4:57 PM, e-Patient Dave deBronkart wrote:

I spoke with @HugoOC today and he told me -

- MIT Technology Review interviewed him at TEDx Cambridge and did a big article on him. (I “ordered” Hugo to deliver the goods so we can post about it!!  Dork. :-))

- Then this week he was on NPR’s “On The Media”!   (Ditto on the above!)

Won’t it be great if this whole subject starts moving out to the general public???

And where, we might ask, is that more vital than in the heart?

SPM member Hugo Campos (Twitter @HugoOC) has a cardiac condition that makes him vulnerable to sudden cardiac arrest. Fortunately he has a device, an ICD – implanted cardiac defibrillator – a magical gadget that helps prevent arrest.  That’s good. But he’s also a geek – a data fiend – who would really like to make use of all the data in the ICD, and he can’t get at it. After all, he has a digital pedometer, Zeo sleep system, digital everything, and he tracks all that data – isn’t it ironic that the most important data is hidden from view?

So last fall at TEDx Cambridge, he gave this nine minute talk that makes the case – compellingly, I think – for letting him do as much as he can to use his heart’s data to save his own life. And tells the TEDx world about SPM, and e-patients “shifting from being mere passengers to responsible drivers of their health.” Spread the word!

Message Date/Time: 1/17/2012 10:00:06 AM
Read Date/Time: 1/18/2012 7:19:08 AM
From: OpenNotes, Study
To: deBronkart, Richard Davies
Cc:
Subject: Reminder: Review your doctor’s notes before your next visit!

---

Dear Patient,

You have a visit scheduled with your doctor soon, and you may find it helpful to review the notes your doctor wrote after your last visit.

The doctor’s notes can be found in the new “Notes” section of PatientSite.  To view your notes, …

I did, and my goodness, there’s a bunch of stuff in there that I’d forgotten!  (Shortly after my June visit I blogged that I’d looked back at the notes to remember a to-do, without having to call the office. Nice.)

Observations:

• It’s good that I can see it. Otherwise I would have been a less-prepared semi-idiot when I arrived.
• Now I’m hustling to follow up on some issues before we meet. Shoulda been doing this earlier.
• There’s more to patient engagement than just having access to the information.

Patients arriving unprepared might give doctors a sense that patients don’t know what’s going on. (Y’think?) It’s my responsibility to look at the notes and act on them, and honestly I’m not in that habit yet. My bad.

btw, my personal vision is for the shared medical record to be organized as a “shared issue tracker,” with dialog and entries about each item. Right now it’s a sequence of individual visit notes, unstructured, with each topic somewhere in each visit. So collecting the notes for a given topic is manual.

(On a separate note, some people freak out at my “disclosing” that I have a doctor’s appointment – and some people even wonder if it’s a HIPAA violation for me to talk about my own medical record. No, it’s my records, my info; HIPAA regulations affect custodians of my data.)

Over on the Harvard Business Review blog a post yesterday is stirring up discussion. I hope well-informed SPM members can help shed some light in the comments there, citing as many specifics as you can.

(As I compiled the paste-ins for this post, I was struck again by how much I love blogging and social media. Just look at the great thoughts that are being spread, in mere hours!)

The post is The Trouble with Treating Patients As Consumers, by Augusta Meill and Gianna Ericson at Continuum, a design and innovation consultancy. Please read the post carefully yourself – my own first reading late last night was too quick. Here are some excerpts, then some comments already added by SPM members then I gotta run – busy day here, starting with voting in the New Hampshire primary.

The post begins:

To be a patient today is to be treated as a consumer. But treating patients as typical proactive, in control, well-informed consumers can backfire. Asked to take on increasingly complex decisions and digest ever-larger amounts of information, patients find themselves placed — often by design — in the driver’s seat.

Two thoughts:

• Design – Continuum is a design firm, not healthcare. Design is great (healthcare needs a ton more of it!) but of course design initiatives need to be informed by a deep understanding of the dynamics of the space – especially the user’s space, the patient’s world.
• “Find themselves in the driver’s seat”: participatory medicine is about moving into the driver’s seat intentionally, not “finding ourselves there” like unwitting victims.

The unintended portrayal of “hapless patient” appears again in the cases cited:

Consider these cases: [a 61 year old woman who can’t deal with moving her data between doctors; a bariatric surgery patient who was inundated with incomprehensible information; New Jersey patients who kept calling 911 for trivial matters.

All are cases of patients who need to be shielded from anything that requires brains. For such patients, paternalism would be the natural answer. That perspective seems reinforced when they then discuss decision aids (for shared decision making, about which we’ve often written). These tools can be quite empowering to the patient, yet the post says “the intent is not to saddle the individual with the burden of the decision.”

In the Society for Participatory Medicine we feel it’s great (not a burden) for a skilled professional to explain our options and their consequences.

To be sure, many patients don’t want to be engaged in decisions, especially before they understand the reality of physicians’ unwarranted variation in practice. Unwarranted variation has been shown in decades of research to cause immense unnecessary surgery, with the resulting costs and inevitable percentage of errors and deaths after surgery that wasn’t necessary in the first place. So much for just doing what the paternal doctor recommends; this is where an informed consumer/patient can make all the difference.

But SPM members are broadening the perspective, in comments. Mine, then Trisha Torrey and another:

… the blog of the Society for Participatory Medicine. We define participatory medicine as “a movement in which networked patients shift from being mere passengers to responsible drivers of their care, and in which their providers welcome and value them as full partners.”

On the blog we have dived several times into the “I’m a consumer!” “Don’t call me a consumer!” (same with “patients”) debate – different people SPEAK those words in different contexts, and others HEAR them in different contexts. I appeal to people to please *specify* their context – which requires first being sensitive to the existence of a context.

Having said that – yes, we have a deeply dysfunctional healthcare system, in which it’s really hard for providers to get satisfaction and often really hard for patients to get what they need – but, if we’re going to wallow in that acrid reality, we might just as well drink hemlock and get it over with. In the e-patient movement we’re starting work at developing the methods of participatory medicine (very early stages) and, more important at first, raising awareness of the issues. Videos of some of my own speeches are atwww.epatientdave.com/videos.

btw, an excellent example of the dysfunction is the 61 year old you cite, whose potential efforts at autonomy and self-reliance are crippled by the archaic state of IT in most of healthcare. In finance her records follow her around whether she likes it or not; in medicine she generally couldn’t make that happen even if her life depended on it. And that’s not hyperbole. (New federal policy is expected to change that, but it will take years – and consider the implications of the fact that healthcare mightily resisted those policies.)

I humbly suggest that this piece – which is thoughtful and well reasoned – would be better titled “The trouble with expecting patients *in today’s system* to act like *fully empowered* consumers.” Too often in the conferences I attend, I see two missing realizations: today’s system is not healthy, and thus it’s not POSSIBLE for patients to be fully empowered. We who strive to be have a big, big uphill climb.  I think your post illustrates that.

And, in response to physician Omar Chugtai -

Hi, Omar – not sure what you mean by “can’t have it both ways” – if you mean “Can’t ask for power without accepting responsibility” (for knowledge and for consequences of their decisions), I couldn’t agree more. If one wants to step out from under paternal care, one has to pick up the shovel, do some work, develop new muscles, and no longer expect to be hand-fed by Mommy & Daddy.

The good news is that the literature in the related field of SDM (Shared Decision Making) shows repeatedly that when patients are fully informed about their treatment options, they tend to not choose *more* expensive treatment, but *less* invasive, less expensive treatment – and to have outcomes that are just as good, or better. Jack Wennberg’s superb book a year ago, Tracking Medicine, documents his 30+ years of work in discovering, researching, and refining unwarranted practice variation in medicine and how SDM (which includes providing decision aids – the Mayo cards are one example) can have this effect.

And yes, Omar, I’d agree the examples cited reduce patients to morons – people with zero competence, whom we must supposedly never overburden with knowledge. Later this week I hope to pull out counter-examples of patients who brilliantly supplement (as partners) the best physicians’ efforts, and in far too many cases (through social networking, online and off) even correct errors and omissions in their physicians’ knowledge.

Overnight “NW Angel” added this brilliant insight:

In those systems that are designed around the patients (like the 620,000 members of Group Health Cooperative) we don’t refer to them as either patients nor as consumers but as “members.” They literally own the system and the providers work on salary for them -

The result? They not only have a medical home model but an EHR that started with patients access, they have the highest quality and highest patient and provider satisfaction scores in the area (Washington).

So this article frames the question in the wrong way  – it isn’t a choice between patients and consumers but between people who are part of their care team and those that aren’t.

This morning SPM member and awesome advocacy expert Trisha Torrey of Every Patient’s Advocate added this, reflecting both her business experience and her broad knowledge of the patient reality: (emphasis added)

Patients cannot function effectively as consumers for at least three important reasons:

1. Because we do not control the money transaction.  If we have insurance, then the insurer defines and controls the transaction, but the transaction itself may have been driven by a greedy provider who knows he will be paid by the test or procedure. If we have a high deductible plan or no insurance, we have no real access to a specific provider’s pricing. Even if we can find a list of charges, we find out later that there were all kinds of hidden charges we knew nothing about.

2. No one ever teaches us to be patients. Studies show that when we have the information we need, we can make smart choices.  But when is that information forthcoming?  Who provides it unless we ask?  As Dave said above – many of us are more than willing to take the responsibility we need to take. But because we’ve spent a lifetime being buffeted by an opaque system, in too many cases we don’t even know the questions to ask.

Third – at the very time in our lives we are required to step up and take that responsibility for our decision making, we are highly vulnerable. Granted, some decisions are fairly simple, or have seemingly limited options to choose from. Emergency decisions are one thing – but being railroaded is another and too often, patients are railroaded without even realizing it. See reasons #1 and #2.

The key to success is not to redefine the role of the patient in an effort to jettison responsibility.  The key is to help patients become invested in the process, teaching them how to make the best decisions for themselves, for their health and their wallets, too. If we are to continue a for-profit healthcare system while trying to cut costs, we need to, at least, level the playing field.

If you have concrete examples you can post there of patients who did excel – against odds in an unsupportive system, with great results – please do post them there.

But please don’t attack the writers – like Trisha and “NW Angel,” shed light. Remember that there was a day when you were new to healthcare and especially the patient experience.

Thanks to Twitter cancer friend @Chaos2Clarity for the tip last night.

The worst part was THIS WAS MY OWN HOSPITAL where I had worked for the past 8 years, the last 3 as a section chief. I never ask for special treatment, and I was not going to get any special treatment — which meant I was going wrestle with The System like anyone else.

He also provides a great learned analysis of the problems he encountered, separating “system issues” from “people issues.”

Funny how his mood seems to match what was said of medical mural activist Regina Holliday, whose husband Fred’s hospital called her “Little Miss Type A personality” in a similar situation. Except Fred was dying.

Give us our damned data. Dammit!

Thanks to @tbtam’s @GrandRounds “Twitter edition” this week. A highly skimmable new format for medblogger Grand Rounds!

• Fools! Damn fools! And Medical Science (Right, Santa??)
• Atlantic: Lies, Damned Lies, and Medical Science
• “Gimme my damn data!” The stage is being set to enable patient-driven disruptive innovation
• Lies, Damn Lies And Statistics: Collective Statistical Illiteracy

These and other “damning” articles deal with statistics, so no wonder our normally polite bloggers would resort to swearing. How our health care data is used and by whom is incredibly important to e-patients, and the fact that much of this is out of our hands rouses a lot of emotion.

This post by guest blogger Fred Trotter originated in an SPM members’ listserv thread that debated which is scarier: the theft or loss of data or the intentional use of health care data by third parties?

There is a lot of danger in “legal but unethical” secondary data use. It is a far greater threat than hackers who steal health care data, IMHO.

I do want to point out, however, that there may be some benefits to a well-managed and ethical “health credit score” concept.

Consider how fundamentally unfair and inaccurate the current credit score system is (the normal one). But that system has created a backbone where normal people in the United States have real-time access to credit decisions. In practical life, this means that if you have decent credit but no money, and you need a sofa, you can get a sofa now. You can use that data liquidity to buy a boat or you can use it to buy a laptop for your new business.

In other countries, personal credit is unworkable because they do not have an effective system for ensuring that people will pay back debt (i.e., not paying it back will hurt their credit scores and limit future purchasing options).

From a health care perspective, that is where we are in the US; we are paralyzed. Without a health credit score, people who are disciplined about their health (i.e., e-patients) end up paying for people who are less disciplined. This creates a crazy incentive where healthy people have strong financial motivation to not get health insurance at all. Which of course makes it more expensive for everyone.

The individual mandate is an alternative approach to a “health credit score,” but it may not survive politically. If it does not, a health credit score might be an important enabler for ensuring that healthy people participate in insurance pools, which is a critical issue.

The real problem here is that the distance between an unethical system which penalizes the sick for just being sick (which is what we have now in any case) and an innovative system where being an e-patient pays off is just a hair’s breadth … and may in fact require the use of precisely the same data.

I do not want to pretend that I have a deep understanding of these issues. I certainly do not. But as a community, e-patients really need to begin grappling with these delicate data-use-balance issues.

The e-patient community is really one of the few that has a tractable notion of what a “high performing patient” might look like. But insurance companies, economists, policy makers, doctors, congresspeople, and lobbyists are all using other models to make assumptions about what patients might be capable of. I am convinced that many of these assumptions are untenable even for high-functioning patients, much less patients of average education and motivation.

Given the scientific approach that I and other “N=1/Quantified Self” e-patients have taken in trying to improve our personal health or wellbeing, I submit that if none of us can vouch for an assumption being made about patients, it is probably a bad assumption. How do we communicate this sort of correction to policy makers? How do we continue to discharge the “patient scientist” portion of the e-patient philosophy in a way that helps policy makers make good decisions? How do we ensure that patient data is used fairly?

Hell if I know.