Gimme My Damn Data!

Gimme My Damn Data!


So far in this series has looked at HITECH participation by hospitals (grumbling but in the game) and physicians (wary, on the sidelines), kudos for ONC’s three major policy points, and how HITECH is already moving the needle on the vendor side. Today we’re going to look at the reason the whole system exists: patients.

It’s possible to look at the patients issue from a moral or ethical perspective, or from a business planner’s ecosystem perspective. In this post we’ll simply look at it pragmatically: is our approach going to work? It’s our thesis that although you won’t see it written anywhere, the stage is being set for a kind of disruption that’s in no healthcare book: patient-driven disruptive innovation.

We’ll assert that in all our good thinking, we’ve shined the flashlight at the wrong place. Sure, we all read the book (or parts), and we talk about disruption – within a dysfunctional system.

If you believe a complex system’s actual built-in goals are revealed by its actual behavior, then it’s clear the consumer’s not at the core of healthcare’s feedback loops. What if they were?

We assert that to disrupt within a non-working system is to bark up a pointless tree: even if you win, you haven’t altered what matters. Business planners and policy people who do this will miss the mark. Here’s what we see when we step back and look anew from the consumer’s view:

  1. We’ve been disrupting on the wrong channel.
  2. It’s about the consumer’s appetite.
  3. Patient as platform:
    • Doc Searls was right
    • Lean says data should travel with the “job.”
    • “Nothing about me without me.”
  4. Raw Data Now: Give us the information and the game changes.
  5. HITECH begins to enable patient-driven disruptive innovation.
  6. Let’s see patient-driven disruption. Our data will be the fuel.

1.     We’ve been disrupting on the wrong channel.

The disruptive innovation we’ve been talking about doesn’t begin to go far enough. It’s a rearrangement of today’s business practices, but that’s not consumer-driven. Many pundits, e.g. the ever-popular Jay Parkinson, note that today’s economic buyer isn’t the consumer, which is screamingly obvious because consumer value isn’t improving as time goes by.

When we as patients get our hands on our information, and when innovators get their hands on medical data, things will change. Remember that “we as patients” includes you yes you, when your time comes and the fan hits your family. This is about you being locked in, or you getting what you want.

I (Dave) witnessed this in my first career (typesetting machines) when desktop publishing came along. We machine vendors were experts at our craft, but desktop publishing let consumers go around us, creating their own data with PageMaker, Macs and PostScript. Once that new ecosystem existed, other innovators jumped in, and the world as we knew it ended.

(Here’s a tip from those years: this outcome is inevitable. Ride with it, participate in it, be an active participant, and you can “thrive and survive.” Resist and within a generation you’ll be washed away.)

2.     It’s about the consumer’s appetite.

We don’t hear it often in healthcare, but disruption Is driven by shifts in buyers’ appetites over time. As products improve, some buyers reach a point where “more” is no longer attractive. If we had 800 mpg cars, a 900 mpg one wouldn’t have more appeal. Other factors start to win.

Clayton Christensen took this analysis to a deeper level In a 2002 paper, as he scrutinized not whole products but deeper questions of how vendors should make strategic decisions to be more competitive: should they make tightly integrated high-performance disk subsystems, or should they build modular components that might run a bit slower but offer more versatile configurations?

In “Disruption, disintegration and the dissipation of differentiability” [subscription required] he demonstrated that the answer varies with time, depending on whether buyer appetites were being fully served: when people want more, they accept a proprietary interface, but once appetites are satisfied, other factors win out. In disk components, when speed is sufficient, buyers find more value in the flexibility of open interfaces.

If you view your health data as a modular component in the “health web of the future,” you see that today it’s tightly integrated – with your provider. That prevents you from seeking care elsewhere, and it prevents you from adding value to your own data by applying innovative tools. To us that’s harm. It’s not just restraint of trade, it’s restraint of health.

Give us our data, and let us feed it to other tools, and Katie bar the door. More on this in a moment.

3.     Patient as Platform:

In Dave’s HHS testimony last week at the Meaningful Use workgroup, he cited Doc Searls , one of the great visionaries of the Web’s early years: in 1999 he co-authored The Cluetrain Manifesto, which foresaw the social impact of people getting together on the web.

He continues to be a pretty slick thinker: he’s now involved with VRM (Vendor Relationship Management), which turns CRM (Customer Relationship Management) on its head, putting the customer at the center. Wikipedia says, “The purpose of VRM is to equip individuals with tools that provide both independence from vendor ‘lock-in’ and better means for engaging with vendors.” Hm, sound familiar?

a)     Doc Searls was right. So imagine Doc’s reaction when, in 2008, he had a medical crisis and his MRI data, for which he’d paid, couldn’t be read by another physician (another vendor).

He ended up with a time-pressured choice to do surgery that proved unnecessary – and which caused a 1-in-20 complication. He posted that “the closed and proprietary nature of heath care is itself a disease that needs to be cured. … I believe the best way to fix health care is for patients to be the platform for the care they get from doctors and institutional systems.” Jon Lebkowsky’s excellent post illuminates the parallels with the e-patient movement.

b)     Lean says data should travel with the “job.” Doc’s idea is consistent with Lean, too.

In March I  (Dave) participated in my hospital’s annual Lean retreat, so I had occasion to read Lean Hospitals, by Mark Graban , Senior Fellow at the Lean Enterprise Institute. He recounts how lean manufacturing outperforms massive ERP systems.

ERP tries to keep all information under central control and deliver it where and when needed in the manufacturing process. Well, give that a Fail: in a Lean factory, data travels with the product, so it’s always where it’s needed when it’s needed. Graban notes, “Lean supports the idea of having exactly what you need, where you need it, when you need it.”

Lean has two arguments for this approach. First, in Lean, moving things around is a classic type of waste. Why not keep it where it’s needed? Second, when errors happen, root cause analysis often reveals that the right information wasn’t where it was needed, at the moment it was needed. (See also AHRQ’s “Five Rights of Clinical Decision Support”.)

In healthcare the consequences of inaccessible facts can be mild or catastrophic. From the consumer perspective it’s crazy to pay a professional to develop information about my health for me and not let me take it with me.

c)      “Nothing about me without me.” A byword of the patient safety movement, the phrase “nothing about me without me” is credited to Diane Plamping PhD. She articulated this in 2000 following a five-day Salzburg Seminar retreat, with 69 participants from 24 countries.

4. Raw Data Now: Give us the information and the game changes.

People often ask, “If we give you your data, what are you going to do with it?” We don’t know – that’s the point: innovators haven’t gotten their hands on it yet!

Twenty years ago Tim Berners-Lee invented the Web. In his TED talk a year ago he told why: he worked in a fascinating lab, and people would bring fascinating and useful information on all sorts of computers. “I would find the information I wanted in some new data format. And these were all incompatible. The frustration was all this unlocked potential.” He proposed the Web: linked data.

It can be hard to see huge potential in a simple change. After Tim’s boss died, the original proposal was found in his papers. In the corner he’d written, “Vague, but exciting.”

Tim’s next big vision says today’s internet stops short: it lets us see other people’s interpretations of datasets, not the data itself. So his 2009 TED talk agitates for change. By the end of the talk he had people chanting, “Raw Data Now.”

Pew understands this: they’ve released all the raw survey data for Susannah Fox’s new study of chronic disease so others can split and crunch however they like. And open data is a hallmark of the Open Science movement.

What if instead of altering healthcare within today’s system, we could do what Eric Dishman proposed at TED and find ways to detect problems before there’s any sign of trouble?

Here’s a glimpse: Dave’s friend Dorron Levy (a data geek if there ever was one, but no physician) has come up with a deeply geeky analysis of the MIT Sudden Cardiac Death EKG database. In these graphs don’t worry what the axes mean. (His analysis is proprietary.) Each shows his analysis applied to digital EKG data from five people, all apparently healthy:

Everyone in the second graph died within 24 hours.

They all looked healthy, and so did their EKGs. But those five dropped dead. His analysis spots early warning signs with clever logic. Imagine if that logic was embedded in some sensor that beeps when trouble’s starting. If you were at risk, wouldn’t you want one?

Why has nobody in the healthcare industry expressed interest in this? We don’t know, but we’d sure like more early warning sensors.

Dorron says one of the main factors holding him back is the lack of more data to analyze. Meanwhile, gazillions of petabytes sit locked up in silos. Rapunzel, Rapunzel, let down our data.

5. HITECH begins to enable patient-driven disruptive innovation.

HITECH has a number of specific provisions that will reunite patients with their data (see the Appendix below). This is a great start!

6. Let’s see patient-driven disruption. Our data will be the fuel.

By definition, intractible problems resist conventional thought. If we want real change, let’s consider alternate approaches, ideally from deep thinkers who can see the structures that keep the problems in place.

So yes, we’ll gladly quote Tim Berners-Lee, because his big idea 20 years ago worked out pretty well – the power of linking documents – and now he wants to link the data itself. And we’ll quote Doc Searls, because his Cluetrain ten years ago foresaw things that some of us are only now learning: the internet gives us autonomy.

And when Doc’s stuff hit the fan, he saw immediately that we’re the big stakeholders, the ones who win or lose depending on the accuracy and availability of the information our doctors have at decision time.

So as HITECH promises to give us our data, we call out: “Innovators, start your engines. Fuel is on the way.” Disruption is a real dynamic, driven by real forces. Put the data in the consumer’s hands, and let real patient-driven disruption begin.

APPENDIX – HITECH Provisions to Share Data With Patients

Stage 1 — 2011 (from Meaningful Use NPRM, December 2009)

  • Physician (EP) Objectives
    • Send reminders to patients for preventive/ follow up care
    • Provide patients with an electronic copy of their health information (within 48 hours)
    • Provide patients with timely electronic access to their health information within 96 hours of the information being available to the EP
    • Provide clinical summaries for patients for each office visit
  • Hospital Objectives
    • Provide patients with an electronic copy of their health information (within 48 hours)
    • Provide patients with an electronic copy of their discharge instructions and procedures at time of discharge, upon request

Stage 2 – 2013 (Note: Items for Stages 2 and 3 are from an initial Meaningful Use Matrix endorsed by the Health IT Policy Committee ( HITPC) in June 2009. Details and specific rules have not yet been developed.)

  • Physician (EP) Objectives
    • Access for all patients to PHR populated in real time with health data
    • Offer secure patient-provider messaging capability
    • Provide access to patient-specific educational resources in common primary languages
    • Record patient preferences (e.g., preferred communication media, health care proxies, treatment options)
    • Incorporate data from home monitoring device
  • Hospital Objectives
    • Access for all patients to PHR populated in real time with patient health data
    • Provide access to patient-specific educational resources in common primary languages
    • Record patient preferences (e.g., preferred communication media, health care proxies, treatment options)

Stage 3 – 2015

  • Physician (EP) and Hospital Objectives
    • Patients have access to self-management tools
    • Electronic reporting on experience of care
    • Provide patients, on request, with an accounting of treatment, payment, and health care operations disclosures

Dave deBronkart, MD, better known on the internet as “e-Patient Dave,” is one of the leading spokesperson for the e-Patient movement. A high tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with a median survival of just 24 weeks. He used the internet in every way possible to partner with his care team and beat this unbeatable disease. Today he is well. In 2008 he discovered the e-patient movement, and began studying, blogging, and speaking at conferences, and in 2009 was elected founding co-chair of the new Society for Participatory Medicine. In 2010 he released his first book: “Laugh, Sing, and Eat Like a Pig: How an empowered patient beat Stage IV cancer (and what healthcare can learn from it).” He blogs frequently at
Vince Kuraitis JD, MBA, is a health care consultant and primary author of the e-CareManagement blog where this post first appeared.
David C. Kibbe, MD, MBA, is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on healthcare professional and consumer technologies.

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58 Comments on "Gimme My Damn Data!"

May 7, 2010

Excellent, thanks Dave

bev M.D.
May 7, 2010

Dave; I agree with all you are saying, but I am a concrete thinker. Give me an example of a hypothetical patient and tell me how and when and in what form they should be given their data, so I can understand better what this may mean and where it can go.
For instance, a hospitalized patient should be able to review his own chart daily while in the hospital? If he has an imaging test, he should be able to send the image elsewhere for an instant second opinion? He should be able to follow his own potassium level daily directly from the lab,or his blood culture results?
Then how about when he leaves the hospital – should he have access to his PCP’s notes about his post-discharge visit in realtime?
I just need a “story” to visualize this,thanks.

Vikram C
May 7, 2010

Thanks for the two articles, that are closed to my heart- patient driven disruptive innovation and patient data. Unfortunately, the two do not intersect and the reason for that is two pillar groups- patients and physicians, haven’t changed, don’t intend to change as of now and don’t have any pent up needs apart from money.
Individually both things are good to have.
Data availability is good. We sometimes hear nice anecdotal story about someone skiing in Colorado needing blood transfusion and NHIN and EMRs come to rescue.
However, look into physician behavior a little bit. Do they really attach importance to historical data older than a year or two? Do they attach importance to data collected by different physician and out of area lab and take decisions on basis of that? There is no doubt there will be some help and value in seeing past information, but the physicians as I know are most heavily influenced by current status and test results. With historical data we would have more tests being ordered than less to satisfy patient’s penchant to ensure that none of the ghosts from past are coming back. And then physician would like to order based on current status. If the information improves outcome for majority in a way that outweighs cost, then more power to it.
As far as patients are concerned, do you see, patients clamoring for same? What do they plan to do with it?
As far as I know I would like to have my data but my physician office charges me $25 for photocopying few pages. I doubt they are ready to sacrifice one of the easy revenue stream.
My opinion on data has been about it’s usefulness in making medical decision at community and national level.
Do we know if bacterias and viruses are getting more resistant to anti-biotics, is there any outbreak of new kind of tests and diseases in an area, how is the new flu travelling etc
We really pay a huge price for throwing away the precious health data. We end up having the focussed research and trials for extended period which jack up the prices for drugs and equipment used and the usefulness thereof is not guaranteed in real life.
I believe that all roads from data land lead to outcome and we don’t have a lot of consensus around that area. Still, I agree, lets collect data and get it in hands of innovators and physicians and not underwriters.

May 7, 2010

“As far as patients are concerned, do you see, patients clamoring for same?”
Vikram, the answer is yes, as evidenced by this article (ePatient Dave), as evidenced by Regina Holliday and her mural “21 days and 73 cents a page” and countless other stories of patients getting disruptive, literally clamoring for their data. Have you seen the new Dennis Quaid documentary “Chasing Zero…?” It’s been airing on the Discovery network. More disruptive patients clamoring for data.

May 7, 2010

Dave, Thanks for the great post on this topic! I also think that providers sharing data with patients (and patients sharing data with providers) is a key element to improving health and care in the US.
To the “If we build it will they come?” question, the most compelling answer that I know of is the adoption rate by patients of Kaiser’s patient portal. After only three years (in 2009), they had about 50% of all patients who have Internet Access become regular users of Kaiser’s first generation portal (2.86 million patients of Kaiser’s total patient population of 8.7 million). The penetration level was about 60% women and 40% men, and about 50% across age, location (e.g. California and Georgia) and ethnicity groups. Only teenagers had significantly lower adoption rates; they may be immortal. What do patients like most in this first generation tool? – Getting labs, managing meds, e-dialogue with providers (which reduced office visits 7%, and phone calls by 14%), refills, making appointments, past visit information. This is only the first generation portal; they are planning to push the adoption rate up with some careful listening to consumers and providers to form new features and tune existing ones. The various value propositions in RWJ’s Project HealthDesign is also a place to go for a bundle of concrete examples of consumer use (and generation of) health information that aids consumers, their lay caregivers, and professional healthcare providers.
As I was reviewing the new Beacon Community awardees project summaries ( , I noticed that quite a few projects involved driving data to patients as a high-level priority. Perhaps some of these beacons will act as labs for the next phase of innovation generation and testing of consumer data usage models.
The post mentioned the various Stage objectives in the Meaningful Use of EHR program that compel data sharing with patients. These objectives will likely affect how/when MU program participants (i.e. Medicaid and Medicare providers) start these practices. To complement these MU objectives, the HITECH Act section 13405(e) requires the timely “transmission” of electronic form data to patients or patient-designated entities in electronic form and restricts any fee to the unit labor costs for responding to the patient request. The section was added as a specific way in which providers meet their more general obligation under HIPAA to provide the “designated record set” to patients upon request. This HITECH requirement applies to all HIPAA-covered electronic health record maintainers (not just MU program participants) and applies now -though related regulations are pending.


I think what Dave is doing is worthwhile. People should have full access to their medical records. They should be able to see their charts, download copies or just pertinent bits and transfer the records to a new provider if they need to. Anything less is ridiculous.
However, I don’t think people should be forced to manage their own medical records. Most folks have no interest in doing that and most folks are ill equipped to do that. Let’s just remember that at any given time most people are pretty healthy and are not about to chase medical records for no clear benefit to themselves. I view this task as belonging to the Medical Home. We also need to remember that medical records are legal documents and providers are required by law to maintain the originals for several years, depending on the State they’re in.
I do agree with Vikram that the big bang for the data buck is in clinical research. That sort of data doesn’t come one patient at a time; it comes in big huge chunks straight from the provider and is usually deidentified.
I just hope we can keep profiteering out of medical data aggregation so we can derive the obvious benefits. Not holding my breath on this one, since most of the drive to get the data out of individual provider “silos” is coming from private industry hoping to make mega bucks from this incredibly rich new source of “consumer” data.
Medical innovation will come from credible clinical research sources. Sales & marketing innovation will come from all other quarters.
We desperately need legislation here. I would suggest 20 years hard labor for the CEO and $1 million per record fine for any company convicted of re-identifying medical data. This should do the job….

May 7, 2010

A hospitalized patient should be able to review his own chart daily while in the hospital? – YES
If he has an imaging test, he should be able to send the image elsewhere for an instant second opinion? – YES
He should be able to follow his own potassium level daily directly from the lab,or his blood culture results? – YES
Then how about when he leaves the hospital – should he have access to his PCP’s notes about his post-discharge visit in realtime? – YES
My spouse had a bone marrow transplant. It was all outpatient. As we waited every day for 60 days we hooked up to the hospital’s guest network and amused ourselves. No reason we couldn’t log onto a web site and see how those white blood cells/red cells/platelets were doing. We had paper from every day’s tests, why not electronic copy?
We have half a dozen disks with CT scans. Never sent one out for a second opinion but we did make a copy and give it to the Radiologist who lost the first copy that was sent to him from our home center. That disc meant more to us than anybody else.
We followed those blood tests. Unlike some tests it wasn’t anything that he could improve with better behaviors, but we could anticipate when a red cell transfusion was coming and adjust our schedule for the longer infusion time.
We have logged on and looked at patient summary sheets from visits when questions about after care or what we were supposed to do arose.
Not every person with a complicated medical situation wants to get into their data/results. For every person who doesn’t there is likely a caregiver or loved one who does take an interest. If they can do a better job or nag their loved one into attending to their health it’s all worth it.

smart patient
May 7, 2010

I looked over my e record at the hospital. There was so much useless garbage there that I vowed never to waste my time again. I will not disclose the vendor, but it is a popular one. That is why I found a seasoned clever creative physician and pay for the professional work. Dave, you must be smoking weed or are so arrogant that you think you know as much as a physician.

May 8, 2010

This feverish post rests on various myths, some of which are widespread, or at the very least resonate with some apparently motivated, resourceful and smart people, so that’s why it is worthwhile examining those:
-Health information is tightly integrated with the provider.
There is a kernel of truth to it – HIPA laws and slow communication technologies cause delays and visits with incomplete information. But a REASONABLE, CONSIDERATE physician does not act on incomplete information, unless it is an emergency. Or unless he/she is driven nuts by patients like Doc Searls (follow link in original post, he admits: “But that information came too late. I blame myself for that too, because I was in a rush to get the procedure out of the way before a month of long-planned travel.”) and who also does not explain for what symptoms/problems the initial MRI was done to begin with (it is possible that the initiation of this first test, like so many superfluous scans, was patient driven as well).
-Patients will use their health data to their (or even ingeniously to everyone’s) advantage.
That remains to be seen. Some blogs and other media like to ruminate stories how patient invention save the day. But you never hear about events suggesting the opposite, stories that happen on a daily basis, i.e. patients acting irrationally and/or to their disadvantage with health care data. As a side note, one should also consider that longer discussions with the health care provider may cost time, bringing up costs and/or worsening access. I am not saying it is not worth the time, I am just pointing out that patients processing a lot of information often require extra resources, and one should always ask whether extra ressources are well spent.
-If you just through enough resources and mental effort at a condition, you will find a diagnosis and treatment offering cure or significant improvement. Unfortunately, that is often not the case: 1) There are still very many untreatable or marginally treatable conditions 2) More importantly, most studies dealing with the subject agree that 20-70% of physical complaints in office based practice will remain “medically unexplained” (and one can speculate where this symptoms come from – depression? anxiety? some other poorly defined CNS condition of unclear pathologic importance such as fibromyalgia?) … here is just one recent study:
But if you get your news from US media, watch Hollywood movies or “Mystery Diagnosis” on the discovery channel, you are bombarded with cherry picked information suggesting/supporting this very myth.
I really had to smile about the EKG graphs (“don’t worry what the axes mean”). Is it possible that the geek is up to something big? It is possible, sure – why doesn’t he hook up with a motivated assistant professor in cardiology/electrophysiology?

May 8, 2010

I became a big fan of Clayton Christensen in the late 90’s and have adopted many of his principles in developing software solutions for healthcare. About ten years ago I stumbled into accreditation and from there into compliance, now HIPAA HITECH compliance. From my observation point data is so poorly protected that anyone wanting to disseminate it further should re-evaluate the current process. Safety and access are two sides of the same coin and until patients feel that their data is safe they aren’t going to feel good about it flying around the world.
A small recent example; A small data security firm purchased five used copiers from a dealer and opened up the hard drives inside. Lo and behold gigabytes of PHI. This is just one small hole in a very leaky boat. People really need to pay attention to HIPAA HITECH compliance before they start handing out data.

May 8, 2010

Hi y’all – sorry for the delay in responding, I never got word that my cross-post offer was accepted! :)
I’ll reply to questions later today.

May 8, 2010

The patient owns her / his data – Period.  In reforming the healthcare system and advancing HIT infrastructure, we should look to the most fundamental axioms for guidance – this is one of them.  It should anger us, for example, that one of the many ways VA patients are disenfranchised from mainstream medicine is that their EMR is siloed.  It should anger us that our delivery system is flagrantly incapable of meeting the available standard of care.  As long as the individual patient’s complete EMR data is not available in it’s entirety at the point of care (it’s not really available until it’s standardized, and honing robust, interoperable patient data standards is our high calling right now), the patient is virtually powerless to do anything about it.  If the patient can be allowed practical access to her realtime data in standard format in her control, the healthcare system will be revolutionized – power will change hands completely – and justice will be served, finally.  A whole industry will form around second opinions and chronic care management – driven by patients, but also good docs who aren’t ashamed to admit they’re not supernatural beings.  Like the compelling ECG analytics method referenced in this piece, opening up the whole digital / standardized chart to patients – and any agents they choose – will usher in an incredible array of outcomes functionality.  This is an absolutely essential step in the delivery system we can finally be proud of and build on – a system, as Kibbe has elsewhere noted, that will extend its healing benefits internationally.  Bravo for the authors and those who are working to give patients absolute control of what is rightfully theirs.  We must not rest until that happens.

bev M.D.
May 8, 2010

J. Stefan Walker;
I would like to talk a little bit about second opinions in my specialty, pathology. There are definitely many times when they have saved lives (read Trisha Torrey’s story, a college classmate of mine). There are also times when a second opinion is reflexively requested by the patient on a routine obvious case of, say, breast cancer – when the patient, who of course is emotionally involved, does not want to believe the diagnosis and desperately seeks a different one. These requests currently require the pathologist to make new microscopic slides of the whole case (which may be up to 30 slides sometimes), and spend professional time reviewing them to ensure they are exactly the same as the originals. (To spend a little time on that, slides are microns-thick slices of tissue embedded in a paraffin block. Each time you cut further into the block, you get a slightly different slice, hence the potential for a change on the new slide). All of this activity: receiving the request, recutting, staining, labeling of the slides by the histology lab, review by the pathologist, mailing of the slides/report – is essentially non reimbursable, especially the professional part. We tried billing for it once and were roundly shouted down by the clinicians, whose patients were complaining b/c insurance didn’t pay.
Of course, digital pathology will someday eliminate this problem, but I am sure it will cause others – equipment expenses, coordination of systems to ensure proper patient identification, etc.
My only point is that, unlike lawyers, physicians do not/cannot bill for many of their activities. This has been shown in primary care also and in any other clinical specialty. To the extent that more of these activities are initiated by patients looking at their data, there will be more $$ and more lost time and more inefficiency and more of the things we do not want to see in medicine. See rbar’s comment for expansion upon this point.
I am not questioning your right to your data, nor your right to a second opinion, nor to your doctor explaining to you what you are looking at. I am simply raising the practical consequences of such decisions and asking you, in participatory fashion, how can providers and patients work together to ameliorate these negatives?

May 8, 2010

Most patients do not give a hoot about their data, they are overwhelmed with it, they do not want to see it, they rely on professionals to counsel them, and they do not have the education to become a quasi physician as some of you making comments appear to be. Most patients need a scale and a diet. You guys are smoking weed to think there is a need for what you propose. Suggest you read a blog or two earlier by B. Klepper who is suffering with life threatening illness.

May 8, 2010

I missed the earlier postings in this series, but will check them out.
Good points in this posting. I have pointed this out before and will again here since another commenter cites the issue: data will inevitably leak in many ways. A good case in point is the example the poster gives of uncleansed harddrives.
My perspective however is – so what? Next to no one cares about anyone else’s health records. Unquestionably there are the more prurient than most among the population who will always look for personal data on someone prominent, but worrying excessively about the issue of data security and imposing exorbitant fines on those responsible for leakage only adds more to the already vast overspending in the healthcare system with next to no benefit to the population spending the money.
Change in the healthcare system, i.e. improved quality and lower cost of delivery, would unquestionably occur were spending on care to behave like spending on other consumer goods. Therefore obviously the more segments of the delivery/financing system that can operate on a competitively determined basis, the better.
Were all or or nearly all clinical data digitized routinely and were all data repositories linked adequately so the data exchange occurred more or less seamlessly (to use the frightfully overhyped word in marketing materials), then the effect of consumer decision-making would start to be felt on the supply side of medical services.
I still think the mindset on the supply side of medical services is so unchangeable that the current group of physicians has to be retired and replaced by the next generation for there to be ubiquitous and productive presence and use of computer technology in medical services and therefore to start to force supply to adapt to consumer demand.
In the meantime conscious, conscientious and intelligent use of administrative control is the way to better the service to patients and to lower costs.
As propensity inadvertently suggests in his/her comment above, the biggest bang for the buck for reducing costs of medical service is publicity and other measures to make the mass of the population aware of the need for good nutrition and adequate exercise. Unfortunately that runs directly counter to the private interests of much of USA industry that makes its living from encouraging poor nutrition and inadequate exercise among the population.