Reviewing your (child's) medical records

[LinksEtc]

"A Difficult Patient"  (Seinfeld - about medical chart)
https://m.youtube.com/watch?v=ZJ2msARQsKU



Lol



--------------------------



Re: Docs helping patients to surf the internet

"Good" Patients and "Difficult" Patients — Rethinking Our Definitions
http://www.nejm.org/doi/full/10.1056/NEJMp1303057

Abiding by the unspoken rules of medical etiquette, I had quieted my internal alarms for more than 2 hours.

When we call patients and families "good," or at least spare them the "difficult" label, we are noting and rewarding acquiescence. Too often, this "good" means you agree with me and you don't bother me and you let me be in charge of what happens and when.

---


Re: Tweet response for @GilmerHealthLaw

Tweeted by @helenbevan

The outstanding talk that @allyc375 gave at #confed2015: "From patient voice to patient leadership" youtube.com/watch?v=dnhjgY... #mustwatch

https://m.youtube.com/watch?sns=tw&v=dnhjgYGbEpk

7:33

I'm a label queen

8:57

"Maelstrom of mayhem" is my particular favorite

--------------------------



Re: Communication and/or negotiation skills


Chapter 31
Communicating with the Difficult Patient or Family

Difficult patients, defined as those who do not assume the patient role expected by the healthcare professional, are encountered in every setting

Labels, such as difficult, hateful, or crazy, tend to follow patients and family members throughout the medical care process and negatively affect the way they are approached and treated (Lin et al., 1991).

By reinforcing and modeling professional behavior and avoidance of labeling, the team leader promotes high quality and safe, patient-centered care.

-----------------


Re: Bias

[LinksEtc]

Tweeted by @SPulim


Medical Records were not meant to be "Sugarcoated"
https://www.linkedin.com/pulse/medical-records-were-meant-sugarcoated-christian-assad-kottner

I am now encountering physicians, being contacted by their patients, arguing that they do not appreciate being called obese in the note. They do not appreciate hearing that they are not compliant when obviously they are not. Since physicians do not want to aggravate more people then they reword or simply refrain from placing particular information in the chart.

----------------------------


Tweeted by @eliza68

"The Healing Power of Your Own Medical Records"
http://www.nytimes.com/2015/04/01/technology/the-healing-power-of-your-own-medical-data.html?smprod=nytcore-iphone&smid=nytcore-iphone-share&_r=0

Steven Keating's doctors and medical experts view him as a citizen of the future.

He pushed doctors to conduct an M.R.I., and three weeks later, surgeons in Boston removed a cancerous tumor the size of a tennis ball from his brain.

encountered a medical culture resistant to sharing data, owing to tradition, business practices and legal concerns

[LinksEtc]

Tweeted by @EricTopol

"Many Patients Would Like To Hide Some Of Their Medical Histories From Their Doctors"
http://www.fastcoexist.com/3042699/many-patients-would-like-to-hide-some-of-their-medical-histories-from-their-doctors

But does, say, your podiatrist really need to know about the abortion you had 10 years ago?

Given the option, 49% of the 105 patients who participated decided to withhold at least some information from their doctors. Four patients went so far as to withhold all of it, meaning every time they saw a doctor, they'd start with a clean chart. Every single patient, even those who wanted doctors to see all their data, said they wanted to be asked.

--------------------------


Tweeted by @CUsafepatient

Patient Advocates Fight for Access to Medical Data: 'It's a Matter of Life and Death'
http://ww2.kqed.org/futureofyou/2015/05/11/patient-advocates-fight-for-access-to-medical-data-its-a-matter-of-life-and-death/

"After requesting Kate's records, I saw all sorts of things that concerned me, whether it was tired residents making mistakes, factual errors, or written notes that contradicted each other."

"Most people don't ask for a copy of their medical record, which is a terrible mistake," she said.

--------------------------


Tweeted by @AtulGroverMD

"The 5 Percent Conundrum"
http://thehealthcareblog.com/blog/2015/05/11/the-5-percent-conundrum-is-about-freedom/

the CMS recently announced its intention to eliminate this requirement and stick with letting people choose whether they wish to access their medical records or not, and not penalize physicians for letting their patients exercise free will

Contrary to what you may have heard in your Twitter/tradeshow/conference echo chamber, most people have no interest in running around with a miniature ICU strapped to their wrist, and couldn't care less about the difference between lymphocytes and monocytes.

-------


Other POV from @ePatientDave

"No MU without ME": join the campaign to fight health data hiding
http://e-patients.net/archives/2015/04/no-mu-without-me-join-the-campaign-to-fight-health-data-hiding.html

The new draft says no more "5% rule" – they only have to show that one patient has done it, and they'll get full federal reimbursement.

I agree w/Dave on lots of stuff, but as long as I can get access if I want it - that's what seems important to me ... @AtulGroverMD has a good point about how docs shouldn't have to force people to look.

-------


ETA more ...

"My comment submitted for Meaningful Use Stage 3 last week"
http://www.epatientdave.com/2015/06/03/my-comment-submitted-for-meaningful-use-stage-3-last-week/

I've heard of doctors begging their patients to log in to the thing, as a personal favor. Docs I know and like. Yet, back in November, half the providers who'd already succeeded at this measure said that 32% of their patients are doing it! What the heck??

-------



Tweeted by @UtahInnovation

"These tweets perfectly sum up the divide on patient engagement"
http://medcitynews.com/2015/06/these-tweets-perfectly-sum-up-the-divide-on-patient-engagement/?utm_source=MedCity+News+Subscribers&utm_campaign=de3e71e17c-RSS_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_c05cce483a-de3e71e17c-67860709

Patient advocates and pro-engagement types dominate the audience at Health Datapalooza in Washington, which kicked off Monday morning. This tweet tells what happens when a vendor executive suggests to this crowd that maybe not enough consumers have requested access to their health data.

[LinksEtc]

Tweeted by @JBBC


"RX NARRATIVE: STORY AS MEDICINE #DOTMED14"
http://journeyingbeyondbreastcancer.com/2014/12/08/rx-narrative-story-as-medicine-dotmed14/?utm_content=bufferda040&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

The medical chart becomes the official story and the doctor the teller of the patient's story. What happens when the patient narrative doesn't match the physician's version?

--------------------------------



Tweeted by @ConsumerDavid

Will you be able to help your college-age child in a medical emergency?
HIPAA Privacy Rule can get in your way

http://www.consumerreports.org/cro/news/2014/08/will-you-be-able-to-help-your-college-age-child-in-a-health-emergency/index.htm

Once a child turns 18, the child is legally a stranger to you," said Jane F. Wolk, a trusts and estates attorney practicing in New York and New Jersey, referring to the legal age in almost all states (in a few it's older).

Three forms—HIPAA authorization, medical power of attorney, and durabe power of attorney—will help facilitate the involvement of a parent or other trusted adult in a medical emergency.

[LinksEtc]

Tweeted by @rzeiger


"Confession of a dishonest physician"
http://ronizeiger.com/confession-of-a-dishonest-physician/

The thing is, I have a conflict of interest. I want to be the hero, the one who asked just the right question and guided the patient to the appropriate treatment.

At a minimum, I don't want to sound dumb.

-------------------------



Tweeted by @EricTopol

"How Differently Patients and Doctors View Health Technology, With Dr. Eric Topol"
http://www.cfah.org/blog/2014/how-differently-patients-and-doctors-view-health-technology-with-dr-eric-topol

Welcome to the digital health chasm, that gap between what consumers want out of digital health and what doctors believe patients can handle at this stage in EHR adoption in doctors' offices and in patients' lives.

I have the video of Jack Nicholson's general in A Few Good Men asserting, "You can't handle the truth!"

&



"Hipaa's Use as Code of Silence Often Misinterprets the Law"
http://www.nytimes.com/2015/07/21/health/hipaas-use-as-code-of-silence-often-misinterprets-the-law.html?_r=1

By the time Ms. Gray found a nurse willing to listen, hours later, her mother had already been prescribed a drug she was allergic to. Fortunately, the staff hadn't administered it yet.

Each scenario, attorneys say, involves a misinterpretation of the privacy rules created under the Health Insurance Portability and Accountability Act. "It's become an all-purpose excuse for things people don't want to talk about," said Carol Levine, director of the United Hospital Fund's Families and Health Care Project, which has published a Hipaa guide for family caregivers.

---


For Family Caregivers
HIPAA: Questions and Answers for Family Caregivers

http://www.nextstepincare.org/Caregiver_Home/HIPAA/

[LinksEtc]

Tweeted by @danmunro


"New Poll Shows Two-Thirds Of Doctors Reluctant To Share Health Data With Patients"

I was having trouble with this link, but it seems to be working for me now.
http://www.forbes.com/sites/danmunro/2015/06/08/two‒thirds-of-doctors-are-reluctant-to-share-health-data-with-patients/

Should patients have access to their entire medical record ‒ including MD notes, any audio recordings, etc...?

For many, the response by over 2,300 physicians came as no real surprise.

this represents the first poll of physician's directly and was conducted through the large physician social network known as SERMO.

---------------



Re: Docs helping patients to surf the internet

Tweeted by @kevinmd

"A physician responds to OpenNotes critics"
http://www.kevinmd.com/blog/2014/07/physician-responds-opennotes-critics.html

I can't get away with labeling a patient in my chart as a symptom magnifier or minimizer, having poor insight into their contribution to the problem, describing pain that does not fit with the setting or findings, making poor choices, non-compliant.

The point is, the collected information, assessment and plan that the patient and clinician are basing diagnosis and treatment on should be used as a collaborative tool, not as the clinician's private record of why they did what they did (to the patient).

I admire this approach/philosophy.

---------------------------------------------------------


Tweeted by @drval

"When Patients Read What Their Doctors Write"

http://www.npr.org/blogs/health/2014/08/14/340351393/when-patients-read-what-their-doctors-write?utm_source=twitter.com&utm_campaign=health&utm_medium=social&utm_term=nprnews

I sat down next to her and showed her what I was typing. She began pointing out changes.

As we talked, her diagnosis — inflammation of the pancreas from alcohol use — became clear, and I wondered why I'd never shown patients their records before.

---------------------------------------------------------


"Progress notes are a poor tool for doctor-patient collaboration"
http://www.kevinmd.com/blog/2014/08/progress-notes-poor-tool-doctor-patient-collaboration.html

Defenders repeatedly invoke "transparency,"

Some of the rhetoric has a defiant, even self-righteous tone

And there's no clear endpoint: about 60% of the patients surveyed in the OpenNotes study believed they should be able to add comments to a doctor's note

[LinksEtc]

Tweeted by @ePatientDave

"How to Take Charge of Your Medical Records"
http://www.wsj.com/articles/SB12367224787933994021304581064031716335262

For most people, of course, it's all too easy to simply leave their health records in the hands of doctors and hospitals. But that's a big mistake, the advocates argue. First, it gives doctors too much power over information that is vital to patients, and it creates opportunities for errors. Perhaps more important, it keeps patients from using the information themselves for their own benefit.

----------------


Re: Docs helping patients to surf the internet

Tweeted by @SusannahFox

"OpenNotes: Putting Medical Record Transparency to the Test"
http://www.rwjf.org/en/research-publications/find-rwjf-research/2014/02/opennotes--putting-medical-record-transparency-to-the-test.html?cid=xsh_rwjf_tw

one kind of record has consistently remained off-limits—the doctor's own notes

The program—called OpenNotes—has been testing, in three different medical settings, the idea of patients having access to their physician's notes.

------------------------------------------

"The promise and peril of OpenNotes"
http://www.kevinmd.com/blog/2014/05/promise-peril-opennotes.html

Don't give them information in the privacy of their own homes that they aren't equipped to deal with, or anything that might hurt their feelings.

------------------------------------------

"Trisha's Misdiagnosis Story   "
http://www.everypatientsadvocate.com/misdiagnosis.htm

I told him I was trying to find another oncologist for a second opinion. There were too many question marks. His reply to me makes me shudder to this day, "What you have is so rare, no one will know anymore about it than I do!"

Records in hand, I began to google every word I didn't understand to see if I could learn more.

If I had to pinpoint an exact moment when this patient advocacy mission began, that moment would be it.

------------------------------------------

I guess I'm a fan of transparency.  I can deal with hurt feelings or difficult news, but let me know what is going on.  There may be some sense in letting the doc talk to a patient before giving them the record like in the cancer example.

[LinksEtc]

Tweeted by @Atul_Gawande

Must read for anyone who needs healthcare... ie, everyone. #getmyhealthdata twitter.com/hmkyale/status...

------


"Happy Data Independence Day!"
https://getmyhealthdata.org/2015/07/04/happy-data-independence-day/

This opening of health data silos will be under the patient's control, and can lay the foundation for a healthcare system that sees patients as partners, and spur unforeseen innovation in technology that helps us manage our health, our healthcare, and healthcare finances.

[LinksEtc]

Tweeted by @EricTopol

"The tragedy of the electronic health record"
http://alphaomegaalpha.org/pharos/PDFs/2015-3-Editorial.pdf?http://alphaomegaalpha.org

Time, sympathy, and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine. One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient.
—Francis W. Peabody

the authors described their institution's and physicians' experiences with electronic health record (EHR) systems, discussed the general state of EHRs and how they are used today, related the problems they have experienced with EHRs, and made recommendations for changing how we use them to reestablish the primacy of the doctor-patient relationship

[CMdeux]

Patients who reviewed treatment notes improved care and safety


Not a surprise, by any means.    Hopefully this will catch on!

[LinksEtc]

Tweeted by @hmkyale

Key point: 92% patients want full access to their records! only 18% docs agree. Patients should win. #HIMSS16

--------


"PATIENTS WANT A HEAVY DOSE OF DIGITAL"
https://www.accenture.com/_acnmedia/PDF-8/Accenture-Patients-Want-A-Heavy-Dose-of-Digital-Infographic-v2.pdf

Most (92%) patients believe they should have full access to their records, while only 18%
of physicians share this belief. Interestingly, about half (49%) of patients believe they have full access (see Figure 5). The perception gap about EHR access has widened in the past two years, a 42% decline in physicians and a 10% rise in patients.

[LinksEtc]

Tweeted by @mahoneyr

I think it would be interesting to read a chart full of "no I didn't" and "wasn't like that." @AureliaCotta #hcldr

 

[LinksEtc]

Tweeted by @EricTopol

"Let Patients Read Their Medical Records"
http://well.blogs.nytimes.com/2016/03/31/let-patients-read-their-medical-records/?ref=health&_r=0

When I read a patient's electronic health record, I now assume what's written there is as likely to be wrong or outdated as it is to be accurate. Sometimes these discrepancies are minor and inconsequential; sometimes they can be devastating.

We now spend two hours a day reporting quality measures, but what needs to be mandatory in the age of digitalization is the art of story gathering and storytelling.

[LinksEtc]

Tweeted by @CMichaelGibson


"As hospitals go digital, human stories get left behind"
https://www.statnews.com/2016/04/06/electronic-medical-records-patients/?utm_content=bufferbd91e&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Epic is not well-suited to communicating a patient's complex experience or a physician's interpretation of that experience as it evolves over time, which is to say: Epic is not built to tell a story.

[LinksEtc]

Tweeted by @ePatientDave

Individuals' Right under HIPAA to Access their Health Information 45 CFR § 164.524
http://www.hhs.gov/hipaa/for-professionals/privacy/guidance/access/index.html#newlyreleasedfaqs