Sunday, April 5, 2009

How personal are Personal Health Records (PHRs)?

Should "P" really be "PARTICIPATORY"?

An interesting and very timely discussion about patient data is taking place on In his post, Imagine someone had been managing your data, and then you looked, ePatient Dave tells about his adventure of setting up a personal health record (PHR) using Google Health, and then importing his data from his "patient portal, PatientSite". (Dave is lucky to have access to such a portal, I thought, when I was reading this. Little did I know....)

Dave was in for a shock. An eye-opening, mouth-dropping, pick-yer-teeth-up-off-the-floor shock. The information that was uploaded did not at all resemble the information he expected. He summarized it like this:

  • what they transmitted for diagnoses was actually billing codes
  • the one item of medication data they sent was correct, but it was only my current BP med. (Which, btw, Google Health said had an urgent conflict with my two-years-ago potassium condition, which had been sent without a date). It sent no medication history, not even the fact that I’d had four weeks of high dosage Interleukin-2, which just MIGHT be useful to have in my personal health record, eh?
  • the allergies data did NOT include the one thing I must not ever, ever violate....
The resulting discussion, as seen in the comments, brought out some very salient points which I hope you'll read. The one I want to touch on in the rest of this post is the need for participatory medicine. I'm talking about the patient partnering with his doctor for all aspects of health care. Included with that is the use of PHRs.

In Your Doctor's Office or the Internet? Two Paths to Personal Health Records, the authors examine the need for PHRs and the two "distinct options" they forsee emerging.
One is a stand-alone personal health record (PHR), such as the Internet-based tools for patients developed by Google, Microsoft, WebMD, health insurance plans, and others.1 Our bet, however, is that the other option, the "integrated PHR" that is an extension of physicians' electronic health records (EHRs), will go further in facilitating the type of physician–patient relationship that will improve health and health care, at a lower cost.
The free, full-text article talks about a hypothetical patient, Mary, and what the potential for an integrated PHR would mean for her. It explains how an integrated PHR is used with part of the Palo Alto Medical Foundation. They also discuss President Obama's stimulus package and his push for EMRs, adding this remark: "Among the many questions likely to arise during this transformation will be how the information in health records will reach patients."

I'd like for them to read Dave's experience. And I would like to see if what the integrated PHR the patients in Palo Alto are using is actually truely participatory. I don't think it is what I call participatory. The following quote does not say anything about allowing patients to change, add to, or delete portions of their PHR.

They can offer patients as much access to data, scheduling resources, and communication among members of the health care team as providers are willing to permit. Some physicians are wary of letting patients see laboratory results and book their own appointments, but provider groups around the country are pushing the envelope and giving patients access to information and the ability to share it with others.
The term "shared patient record" is used throughout the article. Synonymously, the term "patient–provider partnerships" is attached to the use of these integrated PHRs. In a true partnership, however, the patient participates. And that means she participates in the addition, change, and deletion of portions of her medical record. Although the integrated PHR proposed in the article is a step in the right direction, it is not a big enough step. It is up to all of us as patients, and as e-patients, to push for true participation.

In a comment on Dave's post, Stef Verlinden remarks:

To solve this we need to start to create new ‘participatory health information systems’ in which participation in combination with information systems based on open standards leading to citizen/patient centric ‘health information’. The PHR should be an essential part of such an integrated health record that primary purpose is the support of continuing, efficient and quality integrated health care and it contains information that is retrospective, concurrent and prospective. (ISO/DTR 20514).

That pretty much sums it up.

Paul C. Tang, M.D., & Thomas H. Lee, M.D. (2009). Your Doctor's Office or the Internet? Two Paths to Personal Health Records The New England Journal of Medicine, 360, 1276-1278 DOI: 19321866


  1. Great post!

    I just want to make clear, I am very lucky to have access to PatientSite. I used it a ton during my case. What I see is good clinical information: radiology reports, lab numbers, secure email trails, the whole thing.

    The problem came with what PatientSite transmitted to Google Health, which was not my clinical / medical / doctor's diagnoses, it was insurance billing codes. These, I'm told by everyone who has anything to say, are widely known to be a useless crock; clerks (not doctors) go through the records later and figure out what-all they can bill insurers for.

    This was the source of most if not all of my errors.

    And the ensuing discussion revealed that most EMR systems are just that: billing data!

    I have no idea why my hospital chose to transmit billing data instead of clinical data. As my post says, they clearly promoted it completely wrong.

    Anyway, I big-puffy-heart LOVE the idea of PHR=Participatory. You get an e-patient high five for that one.

  2. Dave, I didn't mean to sound negative about PatientSite. Now, re-reading it, I can see how it might sound that way. I truly do wish I had access to something similar. Thank you for explaining! I sure hope folks are going to your post and reading the whole story. Wow. So much there and such an eye-opener.

    If I read your post right, the transmission of insurance billing codes instead of clinical/medical/etc. information will change with a newer/updated implementation in the future. Did I read that right?

  3. Robin, I actually don't know what a future version will bring. I was just being cautious / responsible about not tarring them with too permanent a brush.

    As you know I'm sure, there's an art to being forceful and clear without overextending beyond what one actually knows to be fact.



101 (6) 2009 (1) ACTH (3) addison's (2) adenoma (10) adrenal (6) adrenal adenomas (2) adrenal insufficiency (8) adrenalectomy (1) androgens (2) anger (1) animals (1) antibiotic (1) apathy (1) apnea (1) arginine (1) attitude (2) awareness (19) bacteria (1) bariatric (4) bilateral adrenalectomy; zebra (2) BLA (6) blog carnival (1) blogging (1) blogtalkradio (1) blood work (1) buffalo hump (1) cancer (1) carcinoma (1) cardiovascular (2) change (1) chronic (1) chronic illness (8) circadian (2) classical (1) cold (2) conn's (1) cortef (1) corticosteriod (2) cortisol (7) CSF (1) CT scan (1) cure (1) cushing (1) cushing's (77) cyberchondriac (2) cyclic (2) data (1) database (1) death (4) depression (1) dexamethasone (1) diabetes (3) diabetes insipidus (1) diagnose (1) diagnosis (10) disease (1) diurnal (2) doctor (3) doctor blogs (21) doctor friedman (1) doctors (2) doctors google (1) drugs (2) dynamic MRI (2) ectopic (2) education (1) EHR (1) EMR (1) endocrine (5) endocrinology (1) epatients (5) epigenetics (4) epinephrine (1) episodic (2) estrogen (1) familial (2) fat (1) fatigue (1) ferritin (2) florid (1) flu (1) fluid control (1) food (1) gadolinium (2) galactorrhea (1) gamma knife (3) genetics (3) genotropin (1) gland (1) google (1) google health (1) googling (2) grand rounds (4) growth hormone (13) guest post (1) headache (2) health care system (14) health records (4) healthcare (1) HIPAA (1) hirsutism (1) holiday (4) home (1) hoofbeats (1) hormone (1) hormones (5) hormones bioidentical (1) HRT (1) hurt (1) hypercortisolism (1) hyperplasia (1) hypertension (1) hyperthyroidism (2) hypoparathyroidism (1) hypopitiutarism (4) hypothalamus (2) hypothyroidism (7) iatrogenic (1) ice crunching (1) illness (3) imaging (4) immune (1) immunocompromised (1) infection (2) information (2) insurance (2) internet (1) invisible illness (1) iron (1) journey (2) ketoconazole (3) kidney (1) labs (2) lapband (1) laproscopic (1) levaquin (2) libido (1) macroadenoma (2) medical records (2) medical school (1) men (1) metabolic syndrome (3) metamorphosis (1) microadenoma (1) microscopy (1) mild (1) morbidity (2) mortality (1) MRI (2) MRSA (1) mucinex (1) neuroblastoma (1) news (10) night owl (1) nodules (1) norepinephrine (1) obesity (13) obesity hunger willpower (2) Occam's Blade (1) OFM (1) osteoporosis (2) pain (4) parathyroid (3) participatory medicine (2) pasireotide (1) patient rights (2) patients (7) patientsfirst (1) PCOS (6) PCP (1) pediatric (2) peer reviewed (1) percocet (1) personal (1) PET (1) phenotype (1) pheochromoctyoma (1) pheochromocytoma (1) PHR (3) pictures (1) pituitary (24) pituitary surgery (7) pituitary tumor adenoma research acromegaly (1) poll (1) polycystic (2) prolactinoma (1) protein (1) psychological (1) radiation (1) radio; cushing's (2) rant (1) recurrence (1) reform (2) relationships (1) remission (2) research (26) respect (1) retrospective (4) rocephin (1) safari (1) salivary (2) sarcoidosis (1) science (1) serum cortisol (1) shame (1) sick (1) sinus (1) sinus infection (2) sinusitis (1) sleep (2) soda (1) spoon theory (1) steriod (1) steroids (1) subclinical (2) surgery (11) surgeXperiences (2) survival (1) symptom (1) technology (1) temozolomide (1) testing (6) testosterone (2) thyroid (6) to google (1) top10 (1) transsphenoidal endoscopic (1) travel (2) treatment (3) trust (1) tumor (12) twitter (5) urinary free cortisol (2) urinary infection (2) UTI (1) veteran (1) video (3) Vitamin D (6) weakness (1) zebra (5) zippy (1)

Email me....

survivethejourney at gmail dot com

Subscribe via email

Enter your email address:

Delivered by FeedBurner