Bringing Patients into the Health IT Conversation About “Meaningful Use”

The Obama health team at HHS and ONC are gradually establishing the rules that will determine how approximately $34 billion in ARRA/HITECH funds are spent on health IT over the next several years. But there is a “missing link” in these deliberations that, so far, has not been addressed by Congress or the Administration: how the patient’s voice can be “meaningfully used” in health IT. After all, we, the taxpayers, will pay for all this hardware, software, and associated training. There are many more consumers of health care than doctors or health care professionals. Shouldn’t we have a say in what matters – in what is meaningful – to us?

It may have been an oversight, but patients and consumers have been left very much on HITECH’s sidelines. The attention and the money is squarely aimed at the health care providers – doctors, clinics, and hospitals. The Act’s intention is to create “interoperable” electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals.  This is a policy that is tied unnecessarily to an outdated vision. It is provider-centered, paternalistic and top-down. But it could be re-imagined to take advantage of the new ways millions of consumers, patients, and care giving families are using information and communications technologies to solve problems, form online communities, and share information and knowledge.

We’re moving more fully as a society into the Age of the Internet and, as the economist Jane Sarasohn-Kahn’s landmark study The Wisdom of Patients compellingly showed, patients are far ahead of the health care industry in using it to advantage. Consider:

  • According to the latest Pew poll results “about half the public (49%) turned to the internet for information about the [swine flu] virus. Moreover, asked which news source had been most useful in this regard, 25% of respondents named the internet, putting it at the top of the list of information sources in terms of utility.”
  • An earlier Pew poll showed that between 75% and 80% of American Internet users have looked online for health information, an estimate consistent with similar polling from Harris Interactive’s 2009 data. 78% of home broadband users look online for health information.
  • Going online makes a difference in terms of decision-making, especially for e-patients with a chronic illness or a new diagnosis, according to Pew:
    “For example, 75% of e-patients with a chronic condition say their last health search affected a decision about how to treat an illness or condition, compared with 55% of other e-patients. Newly diagnosed e-patients and those who have experienced a health crisis in the past year are also particularly tuned in: 59% say the information they found online led them to ask a doctor new questions or get a second opinion, compared with 48% of those who had not had a recent diagnosis or health crisis. Some 57% of recently challenged or diagnosed e-patients say they felt eager to share their new health or medical knowledge with others, compared with 45% of other e-patients.”
  • The public appears ready to embrace shared online electronic medical record-keeping. A just-released joint NPR/Kaiser Family Foundation/Harvard School of Public report is summarized in the graph below, indicating not simply privacy concerns, but the strong conviction that this risk would be accompanied by the benefits of improved personal care and overall quality improvement.

  • The public also seems ready, as are some physicans, to use online methods to establish patient-physician relationships and provide care services. As David Kibbe recently reported on THCB, online care and consumers’ familiarity with and use of tele-health is steadily expanding.  American Well and TelaDoc, Google Health, Microsoft HealthVault and a rapidly growing number of companies are part of an evolving ecosystem that speaks directly to the interest of patients and health consumers to engage in many kinds of online health experiences.
  • The e-patient public is showing signs of engaging and even confronting established Medicine on the issue of access to their health data.  A Google search on “e-patient Dave” yields almost 9,000 hits, the majority of these related to Dave deBronkart’s revelation, covered extensively by the Boston Globe, the New York Times, and hundreds of blogs, that his hospital medical records were incomprehensible and often inaccurate.  Dave, a kidney cancer survivor, had taken up the offer by Beth Israel Deaconess Medical Center’s CIO, John Halamka, MD, of automated data transfer between the hospital’s IT system and Dave’s Google Health account.  The good idea was to help Dave create a personal health summary at Google Health that could be refreshed by information from his doctors at BIDMC, and always be available to him as needed. Dave found, thought, that the hospital’s IT system merely passed on billing diagnoses and codes, many of which were neither accurate nor up-to-date.  The upshot:  an apology from Halamka and BIDMC, a meeting with Google Health’s team, and a change in policy at BIDMC.  From now on, only physician-generated and reviewed diagnoses and problems will transfer to Google Health from
    BIDMC.  This story of a modern day David representing e-patients versus a Goliath from the health care industry continues to reverberate in the industry and to have consequences for the future of personal health

So why not include health consumers and patients in the meaningful uses of health IT?  Here’s a short list of ideas about how to do this, provided in part by Don Kemper, the founder and CEO of HealthWise. We agree with his suggestions that “meaningful use” ought to include the routine practice of electronic communications with patients and care givers, starting with these five areas.

  1. Prevention and screening reminders. As appropriate, these should be shared along with a personal health plan and full access to one’s records.
  2. Patient decision aids for major surgery and procedures. This might include messaging pre-and post-surgery to help avoid waits and delays.
  3. Patient instructions for acute and chronic conditions. What to do at home; what signs of problems or improvements to look for; when to call if symptoms develop or improvements don’t occur as expected.
  4. Guided self-management messaging for chronic conditions.  Instructions in self monitoring, lifestyle, medications management, action plans, etc.
  5. Visit preparation for scheduled visits.  This could include questions to ask the doctor or provider and biometric instructions, e.g. the need to fast before a test.

Let’s ask the question another way:  If the HITECH monies are spent on CCHIT certified EHRs that can’t do any of these patient-centered tasks, or EHRs that don’t come equipped with the features and functions to extend health IT capability to the patients and consumers, do we really think that the money will have been spent wisely?

But that’s the pathway we seem headed down, led by the vendors.  As Dire Straits once said, “money for nothing….those guys ain’t dumb.”

David C. Kibbe MD MBA is a Family Physician and Senior Advisor to the American Academy of Family Physicians who consults on health care professional and consumer technologies. Brian Klepper PhD is a health care market analyst and a Founding Principal of Health 2.0 Advisors, Inc. Their collected collaborative columns, including the first 3 columns in this series, may be found here.

37 replies »

  1. Technology has truly advanced the medical field, but medical professionals should also be careful to not overindulge on IT. There should be a clear line between necessity and luxury.

  2. Thank’s. When doctors can be fairly reimbursed for their time AND enough of them want healt to care around a iPod to assist them with diagnoses.

  3. David: Margalit Gur-Arie’s comments should not be overlooked as they are significant. The government is not consulting physicians in order to create effective legislation, so it’s unlikely the healthcare consumer’s views and opinions will weigh heavily in Congress. Nevertheless, they forge ahead in their mad dash to produce sweeping legislation dramatically affecting an industry that in short order will encompass a fifth of the nation’s GDP.
    The three stages of healthcare (diagnosis, treatment, payment) can all be enhanced by EHR adoption; however, ARRA/HITECH’s stated goals of improving patient care while simultaneously lowering its costs are not directly addressed through the purchase of the EHR technology but through its use. Hospitals, physicians and their practices do not benefit from EHR adoption (unless one considers avoiding penalties through compliance to mandates a benefit. I do not), but rather patients are the beneficiaries, though care providers foot the bill. It’s a bit like being forced to pay for a meal you do not personally get to eat.
    From SCHIP to Medicare to healthcare reform, it should be apparent to anyone who pays attention that the government’s involvement is primarily motivated by political expediency. One does not have to look far to see other examples where government involvement produces bloated bureaucracies that can neither improve the industry nor lower its operational costs. NASA is one example. Were market forces allowed in the space travel industry all this time we’d be on Mars by now.
    When doctors can be fairly reimbursed for their time AND enough of them want to care around a iPod to assist them with diagnoses, THEN is when adoption will AND SHOULD take place. Not simply because some senator running for president makes a pledge that a power hungry congress intends to fulfill.

  4. My doctor is fairly young and seems to be as wired as his employer permits. He is really happy with the extra BP readings, and said more or less just what you did about environmental factors affecting readings. I used to be a phlebotomist, and I remember folks coming in to donate with sky-high BPs who swore up and down that it was usually normal. I hope you can help your mom find a balance – when I first took BP meds, I had to be really careful standing up or even getting out of bed. You may be able to set her up with a HealthVault account and help her get started w/o too much trouble, but it sounds like she may need someone there advocating for her as well. Fainting is not cool!

  5. Rob: Thanks for your comment. I’d be interested in your doctor’s opinions about getting more, and presumably better (more accurate), BP readings from you at home. It’s simply amazing the number of people who are treated for hypertension solely on readings in the doctors’ office or clinic, an environment where social interaction and other factors often increase BP from baseline. My mother, who is 89, has had several syncopal episodes (fainting spells) due to over aggressive, completely unnecessary treatment of her “hypertension.” But she has such absolute faith in her provider, that she wants to stay on the medications that cause her to literally fall down. It’s frustrating, to say the least, and dangerous. She’d be a perfect candidate for the same kind of HealthVault interaction you’re experiencing with your doc, and I’m sure many others would be, too.
    Kind regards, DCK

  6. I’m not sure if I count as an early adopter, but I’ve been using HealthVault for a while and am glad I got started. No doubt there are big issues to address, but the benefits – even at this early stage – are great. My doctor is getting more blood pressure info from me, and the flipside of that is that I’m thinking about my BP more often. Win-win!

  7. Dear Pam: I think you are 100% correct that there needs to be a professional helping most patients organize their summary health information, make sure it’s accurate, keep it relevant (as you point out not everything in my medical record is or stays relevant), and up-to-date. I think that e-Patient Dave, Judy Feder, and many,many others are looking for, and finding very difficult to obtain.
    Having said that, I do think that software can get a whole lot smarter at aiding us with these tasks. Last week, I was on a panel for a Congressional briefing in DC on Mayo Clinic’s Health Manager, which is built on Microsoft HealthVault. It’s an early example, but pretty cool nonetheless, of computer-aided decision support for preventive services and alerts and reminders associated with specific illnesses and conditions. And it works off the data stored in HealthVault.
    And yes, there is a business model here: I know of people who are saving patients and insurers a lot of expense by sorting out complex patient medical information, and would be glad to put you in contact with them if you’re interested.
    Your asthma example is very good. Makes me think about how the airports are experimenting with categories of travelers at screening, sorting “expert” travelers into one line, and the “newbies, parents with babies” into another line, so that (at least in theory) the TSA can do a better job of allocating resources and make the experience of getting screened less offensive (it will never be fun!).
    We have to do the same thing as people with different conditions learn, gain experience, and can share their knowledge with others. Cookie cutter approaches are only satisfactory if they evolve to handle more complexity.
    Kind regards, DCK

  8. Dear Dr. Kibbe,
    Computer-summarized primary diagnoses on Kaiser electronic medical records, selected from a limited number of common diseases, and presented by the most recent four (it appears) immediately strike the eye of any health professional accessing the record, In the era of 9-minute visits with the doctor if the top four aren’t really the top four, the patient is in for trouble.
    If a patient has an “incurable” chronic condition, opts to forego palliatives, and does not consult a doctor with reference to this condition, this condition drops off the record. Nevertheless the chronic condition, or disability, may limit or inform other diagnoses. How does good software deal with this? How can computer routine be infused with judgement?
    When a common descriptor like asthma is seen by the health professional, multiple assumptions are made which may or may not be accurate. A patient presenting with RAD, newly diagnosed, and a prior history of bronchospasm once every 5 years knows a lot less about asthma than someone who has regularly experienced asthma since childhood. The record says “history of asthma” in either case. What steps can be taken so that patients are actually better off rather than simply fitted into cookie-cutter categories by hasty, semi-accurate data read into a computer? Since, by law, medical records cannot be changed how can records be purged of incorrect or misleading data?
    Computer records are absolutely crucial and sometimes the patient is the only one who takes the time to synthesize the raw data into a product which makes sense. Shouldn’t there be a professional who summarizes these patient records regularly just like an editor edits a novel? Wouldn’t there be enough savings in the reduction of medical errors to justify the expense?
    When the computer age was beginning, programmers had the expression “Garbage in, garbage out!” This expression directly applies to EHR. If provision is not made to prune out what is not germane, we quickly reach information overload.
    Pam Drew

  9. Sherry: Thank you for your long and articulate response to my post. I will take some time to digest it!

  10. “in my own situation, although I have a family doctor, I cannot get free telephonic or online care at night or the weekends.”
    If your physician doesn’t provide telephone coverage outside of office hours, he’s not meeting the generally accepted standard of care. Get a new doc.
    “More generally, there ARE places in the country where family physicians can get paid for online visits. As a matter of fact, most health plans will now pay for these visits.”
    Wrong. NONE of the plans with which I have contracted pay for on-line care.
    “Get with it!”
    Please don’t tell me to get with it when your knowledge of the reality of the practice of medicine is so incorrect.

  11. Dear Judy Feder: I find your story about the Her2 test and associated treatments fascinating on several levels. Primarily, however, I dig your point about the “catch 22” that keeps patients cut off and in the dark, because there’s a lack of good information, which then decreases the possibility for better information being shared, and so on….
    This is why we need to engage patients/consumers/citizens in not only their own, individual care, but in the care decisions that are made for populations of patients. We can’t always wait for the results of hugely expensive clinical trials, which in part justify the huge prices charged by pharma for the drugs that are being studied. (Another Catch 22) We must find ways to make data and information gather-able at much lower cost,, and use the “wisdom of the crowd” of patients/consumers to supplement and complement the scientific trials. It’s one of the most important things we can do to make care affordable, which so many people with a vested interest in the industry tell us cannot be done.
    Bravo! Please keep commenting and finding ways to bring the patients’ voice to the discussion of “meaningful use.”
    Regards, DCK

  12. First, let me thank all of the commenters for their thoughtful comments. Where to start?
    Ok, patient x suggests that I simply call my family doctor, and I’ll get all the information I need, for free. I think there’s some irony and sarcasm in that response, because he/she is a family doctor, and knows that providing these services for free is a problem for the economy of small medical practices. Here’s my response: in my own situation, although I have a family doctor, I cannot get free telephonic or online care at night or the weekends. Basically, I get no service except the ER. (Yes, I could call my dcotor friends, and they would help me out, but I don’t do that.) More generally, there ARE places in the country where family physicians can get paid for online visits. As a matter of fact, most health plans will now pay for these visits. They’re easy to set up through a number of patient web portal companies. No reason to enforce a bad situation for yourself and for your patients. Get with it!
    Gary Wolf is absolutely correct, in my opinion, when he says “patients are coming in on their own accord, like it or not, which means that the winning EHR solution will ultimately be the one patients adopt for their own care. This is where the most important innovation is; more importantly, it is where the genuine social pressure lies.” Hard to gauge or quantify this pressure, but it’s definitely there, and becoming more IT empowered every day. And I agree that the piles of patient/consumer/citizen-generated data that accumulate will become enormous, and the object of significant study and analysis. The institutions, for the most part, won’t understand the significance or the value of these data, but others will.
    Randall Oates brings up the real world constipation experienced by physicians and some of their EMR vendors who have fought hard, but lost, the battle for health data exchange and interoperability. Why is it that Google and Microsoft, and now Apple, and the ecosystem of companies around them, can get data exchanged so easily and quickly? But the health IT vendors who control the EHR market can’t seem to? Why is there no doctor adoption problem with the iPhone?
    Wendell: I share your concern that the major portion of the $34 billion in HITECH funds will go to into the pockets of the established EHR firms, and their large practice/corporate customers. 30% of the clinics will be paid to have implemented non-interoperable IT systems that totally ignore patient/consumer/citizen communications and participation. Better to put the money away in the Treasury until we figure out a better plan!
    My guess is that the market will evolve the technology toward Clinical Groupware, regardless. Provider-centered software that isolates each person involved in one’s care has no chance of supporting a business model for care that offers lower cost, greater convenience, or better quality. The older technology is part of the problem, not part of the solution. But it’s going to change, if only because the health care industry has priced itself out of the market for most Americans, who no longer can afford health insurance or even routine medical care.
    Sherry Reynolds: Thanks for your great examples of IT that supports participatory medicine. The business models need to change, but that’s happening. Otherwise, health IT for patients will be stand alone and some physicians will find themselves increasingly isolated from their communities. Who ever said change was easy?
    Kind regards, dCK

  13. Around the year 2000, a survey of the AAFP membership revealed that the costs for a simple HL7 interface averaged $14,000. I am confident a repeat survey in 2009 would be about the same. The lack of AFFORDABLE interoperability is an obstacle that has yet to be addressed in any meaningful fashion. The road maps to interoperability being advocated by the industry and government do not appear to offer any reasonable paths to ensure that interoperability is AFFORDABLE for a majority.
    I would love to hear of any efforts that promise to ensure that interoperability will be AFFORDABLE, even if possible.

  14. Thank you for this interesting discussion – some of the best thinking has been in the comments. One interesting angle on “bringing patients in” is that patients are coming in on their own accord, like it or not, which means that the winning EHR solution will ultimately be the one patients adopt for their own care. This is where the most important innovation is; more importantly, it is where the genuine social pressure lies. The most likely winner among electronic record-keeping tools for patients are the tools that are already being adopted by e-patients: open web based solutions that skimp on security and features in exchange for simplicity and access. I don’t think there is any need to spell this out for the well-informed readers of The Health Care Blog, many of whom already use these tools themselves. It takes all of five minutes to set up a shortcut on an iPhone that will give a simple form to post biometric data to Google docs (or wherever in the cloud you live). Don’t be fooled by how geeky this seems, such impressions change quickly, and if you have a serious condition that requires you to do internet research on pharmaceutical research (as many people do), figuring out how to click “go to live form” on Google docs is child’s play.
    Once this data from patients begins to accumulate in great disorganized piles, ad hoc data standards will emerge, and then ad hoc solutions for translating data collected using two different standards into a third standard. This process is messy, inevitable, and of proven value – just look at the browser wars from the 90’s.
    Yes, it will be a clusterf***. But the best health care institutions will begin dealing with it, and the laggards will eventually be forced to follow.

  15. The funds will be wasted in the sense that almost entire amount will flow through to major software vendors – has anyone seen the commercials for GE’s push to capture as much of those billions as possible? – with much too little to show for the expenditure in regard to improved operations in either facilities (hospitals) or physicians’ practices. Anyone with any experience in system implementation or anyone who has even peripheral experience with the behavior of physicians or hospital executives knows that.
    My preference as citizen is that the funds be put into trust, i.e. invested in Treasury securities, indefinitely until most potential users wake up to the availability of at least one, but one hopes more than one, federally-encouraged (or better yet sponsored) FOSS EMR/PM product. Then the funds can be slowly disbursed to aid in training users or rolled over into the Medicare Trust Fund – much better use of the funds.
    I am doing whatever I can personally to try to have a federally-acknowledged at least FOSS project established. The basics already exist, but more resources need to be devoted to software development. Much more importantly resources need to go to the development of installation/training materials for the use of the software. That is where some next-to-negligible (i.e. in the hundreds of thousands of dollars) funding from the federal government could be very profitably allocated.
    A widely publicized, well-documented, superbly-functioning software application could be made available within a year using any of several existing FOSS projects (or existing proprietary software), well before the healthcare ARRA funds are due to be disbursed, thereby largely obviating the need to disburse the funds.

  16. I am also afraid of the waste – but more because I’m working in Health IT, have been for about 12 – 13 years, and I’ve seen it first hand.
    Perhaps the reason that patients are champions of EHR’s is that they don’t understand why it is so difficult to implement. I can certainly vouch for clinical advantages to EHR’s, but the process of implementing can be financially deadly.
    The other day I wrote a blog about meaningful use, basically stating that my biggest concern was how they are going to monitor it. Self-report is a notoriously bad data source, but it may be the only way to determine ‘meaningful use’ and in that case, that makes me VERY nervous. I also have problems with the current rating of EHR’s and EMR’s — and am worried that the federal government will adopt CCHIT’s standards.
    Right now, it’s a scary world in Health IT. We need to treat this like every other project, and get sound in from stakeholders across the industry — payors, providers, patients — everyone. I just hope it’s approached in a logical manner, but I’m just running out of faith.

  17. Patient X aka Family Doc,
    Thank you so much for joining into the conversation and articulating what is a very common fear among private practitioners (that it will cost you time or money) when these issues are discussed. What values are the most important to you? What changes derive from those values?
    Perhaps medication reconciliation from e-prescribing? Being reimbursed for email answers? More time to see your patients? Registries that allow you to track all of your diabetic patients in a glance? Patients who are informed about their conditions? No more space spent storing records? My values drive the tools and techniques we ope rationalize (and the real value isn’t the technology but work flow changes combined with a new culture of patient empowerment).
    In no way am I oblivious to the very real fears of how it might be perceived that this might impact your business model if the technology stands alone. It is very common for people to respond to change with fear and hesitation and I applaud you bringing that voice alongside my own to the table.
    The larger issue is that until we link technology with payment reform many of the “savings” and improvements in care will hit up against concerns of people like yourself. If technology (say an MRI) makes a provider or hospital money they are very very quick to adopt it and if a consumer “wants” a service nearly all good business people find a way to provide it. Have you seen what Hello Health is doing in New York with online and at home visits for example?
    What if this technology allowed providers to run the medical home model (Group Health in Washington State is converting all of their clinics to this a few years after implementing not only a robust EMR but more importantly changing how they work) across the entire state for over 500,000 patients. Others use it int he private sector as well. Would you like to be able to see patients for 30 minutes or more and improve your income? To be at the center of your patients care again?
    Although “cost” if often a concern to patients what we are really striving for is value received. Everyone knows that people receive the standard of care for example less then 50% of the time. Both patients and providers would benefit from improving that. Duplicate and unnecessary tests cost more but hospitals and doctors offices actually have a disincentive to eliminate those. In Oregon for example 2 hospitals decided to not share lab data as it would have hurt their profit margin.
    In Hawaii recently for example when Kaiser was able to cut visits to family practice by 25% by using email and phone visits it freed up their time to see people with chronic conditions. The response of many private providers was that they couldn’t do that as they would lose money. Medicine is a business and we not only will get what we measure but what we incentivize. What if however you were paid to respond to emails?
    How for example might this investment play out if we gave the money to consumers to use to “purchase” care at facilities that provided these tools? What if you (or your staff) were paid to respond to email questions?
    Blue Shield now has a service so that Patients in Hawaii can now have a short consultation with one of 140 physicians whenever they need to, available 24/7
    Again thank you for taking the time to bring the very real voice of individual providers to the table and for bring forward a legitimate concern. We need to hear all voices not just those of us who have lived and breathed this for years. It is only when patients and providers are partners in healing this broken system that we will find a solution that works. Perhaps I am naive to believe that patients and providers both want high quality, patient centers care that is affordable, accessible, effective and Sustainable.

  18. Thank you so much for once more advocating for the wisdom of patients! A cautionary tale on this subject, stemming from my “crusade” to shed some new light on Her2 testing for breast cancer patients, following my own near-death experience and the lifesaving information I found on my e-patient community (http://e-patients.net/archives/2009/03/e-patient-judy-feder-the-life-saving-power-of-informed-patient-communities.html)
    I find myself in a Kafkaesque maze that I think could only have been built in the US healthcare system! My research into the serum Her2 test that enabled me to begin trastuzamab therapy reveals that there has been relatively little comprehensive study of this test. Moreover, what studies have been done tend to focus very narrowly on using this test to monitor progress once a patient has already started the therapy. What I’m looking for is more evidence that patients may benefit from having the test as a baseline, to help determine if they should start the therapy in the first place!
    Many wise people are cautioning me not to put too much faith in the test. Why? Because the literature is not conclusive in this regard. Exactly!!! I’m trying to escape this Catch-22 by encouraging a patient-driven registry of experiences with Her2 testing
    ( https://vovici.com/wsb.dll/s/955fg3d09c.
    Here’s the real kicker. One of my dear cancer sisters tried for months to have her onc approve this test for her. After his outright refusal, she acquired the kit on her own dime, and got another sympathetic doc to send it out. When it came back positive, she then asked for trastuzamab therapy. Again the onc refused. His ostensible reason was that the evidence was not compelling enough. But mixed up in his message to her was a clear indication that he was scared that Medicare would not cover the tx, and he’d be stuck with the bill.
    I don’t mean to trivialize his concern…we all know the pressures docs are under. However, in my mind, the only meaningful use that was getting through to him was whether he was meaningfully going to be risking a cash flow problem.
    The story ends with my friend finding another onc who was more than willing to try the drug — and with Medicare stating conclusively that they would cover it based either on biopsy or blood test. Hooray! But there is something really wrong with this picture.
    Judy Feder

  19. There is a terrible confusion of terms here, I think.
    Most of the time the technologies that ARRA refers to collectively as EHR seem to be tools that providers use in the course of their daily work. Sometimes it seems that EHR really means the medical record itself. In both cases these are tools that physicians are supposed to “meaningfully use” in lieu of paper charts and pencils, I presume.
    These technology tools are built for physicians, sold to physicians, and paid for by physicians. I hope nobody is under the impression that $45K over 5 years begins to pay for the purchase, deployment and “meaningful use” of such tools.
    Nevertheless, practicing physicians are not consulted on the design development and use of these tools. It’s done by decree of customary “powers-to-be”.
    So, Sherry, there is a slim to none chance that anybody will be consulting patients on these matters, since they (we) are not even direct customers of these tools.
    It would be nice if we could all get access to the items on your list for free, but that implies that physicians will have to bear the cost as part of the “meaningful use” mandate.
    In any case, as Dr. Oates predicts, most docs will not be able to afford what looks more and more like very expensive and convoluted tools, so that makes the entire patient participation a moot point, unless your provider is part of a very large group.
    If what we want as patients is really quality care, I would suggest that we focus our efforts on changing the reimbursement model, particularly for Primary Care.

  20. “and don’t have to spend $155 at the urgent care in my community”
    David, that must be the Chapel Hill rate – professors salaries and all. I get urgent care in Graham for $65.00 :>)

  21. Dr. Kibbe:
    Yes, you have access to all those conveniences, but the cost of them is included in the ultimate charges that you pay to the airlines, banks, etc.
    Nobody is providing services for free!
    As a family doc, I could give Sherry all the services she expects tomorrow, and I would be paid zero dollars and zero cents for doing so.
    “And, if I want an online visit with TelaDoc, it costs me $55, which I’m glad to pay if I get the advice I need and don’t have to spend $155 at the urgent care in my community, or $455 at the ER at UNC.”
    But why not call your family doc and get all that for free? That’s the way the system works now!

  22. Dear patient x: Wait a minute! I go on line at least once a week to make an airline reservation, and I don’t pay a penny for it. Three or four times a week I interact with my online banking app, and don’t pay extra for that, either. I have taken my MinuteClinic lab results, and moved them to my Google Health and Microsoft HealthVault accounts, and don’t pay for that convenience, either. And, if I want an online visit with TelaDoc, it costs me $55, which I’m glad to pay if I get the advice I need and don’t have to spend $155 at the urgent care in my community, or $455 at the ER at UNC.
    So, maybe I’m missing something?
    Thanks, and regards, DCK

  23. Sherry:
    You leave out:
    9) We expect ______ to pay for all of this.
    Many of your expectations are conveniences, not true measures of health.
    Convenience is expensive. Do you really want this to be included in the new model of health care?

  24. The health IT sector is indeed progressing in leaps and bounds. Indeed the health care industry has joined hands with the IT sector for a technological advancement.

  25. I certainly agree that it’s a good idea to get the patients involved. But my lingering worry is, what percentage of ALL patients (not a pre-selected subpopulation of patients) would take advantage if they were given the opportunity? I worry that the large proportion of “Joe the plumber” healthcare equivalents (that is, those who are poorly educated about healthcare and have no interest in learning)will not use such a system even if our taxpayer dollars are used to provide it for them. That leaves our dollars benefiting only the small, but active, group of e-patients. Even though I am a member of that group, is that the best use of our allocated IT dollars?
    I would like to see some statistics on what percentage of the entire U.S. public uses a computer to assist in their health care. I bet it’s small.

  26. EHRs and health IT alone won’t fix health care. So ,there is a need of developing a comprehensive but effective national health IT plan is a huge undertaking that requires broad, non-ideological thinking.We want care that is coordinated, not fragmented

  27. Gilles: Complete agreement. I think we should re-write that sentence the way you composed it.
    Randall: You have always represented the “little guy” in medicine, the small practices and their doctors and staffs. So it’s disheartening to hear your prediction that the HITECH monies — and any benefits attached — will go to just the large system players. But you’ve been right before about these things.
    John and others: How do we get attention for the patient /consumer / citizen into the limelight and on to the policy stage at ONC/CMS/HHS???? Is it time to create a “citizens lobby” to get these points across to legislators?
    Regards, dCK

  28. “The Act’s intention is to create “interoperable” electronic health records that, in the future, will be more accessible to them: doctors, clinics, and hospitals.”
    I take issue with including doctors and clinics in this group. The current road maps for interoperability being proposed by the vendor/government/academic interests largely in control promise to only make health records accessible to the the 30% of practices that are a part of a large system able to afford the infrastructure to support the type of “interoperability” being proposed. It is likely to exclude the other 70% of physicians and clinics just as much as the majority of consumers.

  29. David and Brian,
    Nice post you have hear and good to see you bring some visibility to the issue of what is in the HITECH Act, for not just the e-patient, but how about Joe the plumber and Jane the IT exec? To be truly successful we will need to think beyond those who are already sick or dealing with a chronic disease (even though they eat up ~75% of all HC costs) to the broader public. If they don’t see something meaningful to them at the end of the day, what are we left with – SW vendors drinking champagne and a p*ssed off taxpayer?
    Looking ahead, I am hoping that as part of meaningful use definition, care coordination would include sharing records with the patient to facilitate care. Also, as to quality reporting, quality metrics will be visibly & openly reported and leveraged in such a way that is beneficial to the consumer. And let’s not forget eRx. Hey doc, let me, the consumer request a refill online and I’ll pick up the script on the way home from work. Now those may indeed be meaningful uses of IT that a tax payer can get behind.
    And THCB moderator, please SPAM the post by Jay Beauilieu as it is nothing more than a sales pitch.

  30. Excellent article — the patient must always be considered first, no matter what aspect of health care reform is being discussed.
    One observation: I wonder, if pre-existing condition exclusions were removed as a barrier to health insurance coverage, if some privacy concerns would be alleviated? If everyone is guarenteed coverage (in whatever form emerges), would we be as fearful? There will always be privacy concerns, but those exist as well with paper records (which have no access tracking capability). The question is, as Drs. Kibbe and Klepper point out, the trade-off; how much are we willing to give in order to get the better outcomes, better safety and better service that an integrated, interoperable EHR can help provide.
    Also the abiilty to track who accesses electronic records exists; if this information were available to patients as well as providers so access could be monitored, would we feel better or more secure about having our medical information in a secure, interoperable EHR?
    The opportunity to take a remarkable step forward is in front of us; patients need to insist on being an active part of the discussion.

  31. David,
    Thank you for the post. Of course the patients should have been ask to speak at all the HHS sponsored meeting with equal timing given to patients and their chosen representatives. That’s right, 50% of the speeches should have been given by a myriad of patients, just like we heard a myriad of representatives of the various professions involved in HIT. Each one coming with their own built-in bias. There are many patient voices, representating many view-points. Those of us that are most vocal cannot and should not speak for all.
    But I think you missed the core issue.
    You write “But there is a “missing link” in these deliberations that, so far, has not been addressed by Congress or the Administration: how the patient’s voice can be “meaningfully used” in health IT.”
    I would have written “But there is a “missing link” in these deliberations that, so far, has not been addressed by Congress or the Administration: how health IT can be “meaningfully used” by the patient.”
    We, the people, are not an add-on to the healthcare system. We are it’s PRIMARY stakeholders, even though the established reimbursement system has totally hidden that fact.
    The real question is “What can HIT do for me? I pay for it and therefore I own it.”
    There is much work to do by today’s engaged patients. We must convey the fact that there is no possibility of successful healthcare reform unless every American citizen learns to own “his/her health”. No more proxies for that ownership, please!

  32. Dear Sherry: This is a great list! I especially like the feed back loops (#5) as it can’t really be Participatory Medicine unless there is continuous improvement and communications two-way that is dynamic.
    I also like the Location (#8). We need to “bring the solution to the problem,” and not require face to face visits for every encounter or communication.
    Kind regards, and please keep the conversation going,

  33. My twitter friends just encouraged me to post an actual example of how we might start the conversation. This is a work in progress so please feel free to add to it with your own voice.
    In order for a health IT system to have real value with outcomes that matter it must include the voice of the patient / consumer / people who receive and pay for health care services in its design, policy and in the on-going use and modification. Patients expect providers to be responsive to their needs and preferences, to provide them with two-way real time access to their medical information, and to treat them as partners with respect.
    Building on the vision of person – centered care, we expect:
    1) Information and convenience – real time access to information, including our medical records, labs, clinical notes as well as the ability to make online appointments and share our own ODLS’ with them.
    2) Engagement – Email access to our care team as well as that ability to have simple questions answered online or via the phone (Kaiser and GHC do this already) with full participation in treatment plans and follow-up if we desire it.
    3) Safety – we expect our providers to use registry’s, clinical alert systems and quality outcomes to monitor our care and if we desire to provide consumer friendly alerts to us as well.
    4) Security and Data Liquidity – we expect that the ability to share our medical information will be as secure and as easy as the banking system is but if that data is monetized that the patients will benefit directly.
    5) Feed-back loops – we expect that our providers, health care systems and ancillary providers will have feed-back loops and patient satisfaction systems built in.
    6) Quality – we expect to have access to quality reports on treatments, facilities and providers with no risk from patients participating and that we will receive the standard of care at each visit customized for our condition. (For example we don’t care if you are meeting a standard 80% vs 82% of the time we expect 100% in our visit)
    7) Participation – we expect that patients, consumers and family members will be pro-actively included in the design, development and use of any health information technology system as well and are embedded alongside clinical decision makers across the continuum.
    8) Location – we expect that the tools developed will be delivered where we live via mobile phones, sms, the web and not solely in a providers office or medical home. We envision real time access to care anyplace and anytime we need it.
    Finally we don’t expect that we are an after-thought or that someone should invite us to participate, we expect the conversation to start with us.
    The goal of all of this is to have healthier people and you the end is embodied in the means. If we aren’t helping design the system from the beginning we aren’t going to end up with a patient centered system.
    Sherry Reynolds
    aka @cascadia

  34. Thank you for picking up on this important topic David!
    Many of us who are involved at both the State and National level are excited that people are not only started to “bring us” in but to realize that the health care conversation starts with and should be centered around patients. The use of language and we voice is a powerful tool in bringing effective, high quality, affordable, accessible patient centers care to everyone (patients like me, epatient Dave sickness model) / consumers (reduces health care to a monetary transaction) / people (too broad).
    It is not enough to have dedicated consumer advocates through surrogate agencies, care out representation on boards nor even policies. All good product designers, organizational change agents and social media campaign experts will tell you that if you want to end up with a system that reflects the needs, hopes and aspirations of a population they must not only be at the table but helping to literally designing your future state in partnership with their providers.
    The current administration understands the power of “Groudswell” as well as the critical importance of capturing that energy and we could use the expertise gained in engaging everyone in the conversation about Health IT as we transform the health care system. Health IT at its heart is really just a tool in that process and the same skills that you use in a successful implementation are well known.
    Build a strong sponsor (govt and the people, identity key stakeholders and engage them long before the implementation, communicate communicate, communicate, recognize unique needs and customize your process, focus on process issues not technology, educate and train everyone, provide intimate hands on support during the change, use the power of a shared narrative, understand that the bulk of the work and change will happen after you implement the technology
    On my link for example is another way to view what “outcomes that matter” vs meaningful use might look like.
    Sherry Reynolds
    aka @cascadia

  35. I am also terrified that the billions will be wasted. I agree with you 99.9%, the exception being that “Medical Best Practices” need to flow downward. I offer two technologies Services-Oriented Architecture (SOA) for contracts and Darwin Information Typing Architecture (DITA) for views and workbooks. And the following solution:
    There are currently three basic types of medical records,paper medical records, the folder we all know so well, the electronic medical record used mostly at hospitals, think of a printout from a computer system and the Electronic Health Records (EHR) which are XML-based records that have the ability to reduce costs and errors because they are programmable and can be validated (checked for accuracy and completeness.)
    The first discussion we need to have is who should hold these records. If the goal is to fight disease, find new cures, to identify epidemics and to use these records as a basis for an unparalleled growth of healthcare knowledge over the next ten to fifteen years, we need the records easily and securely accessible. There are two groups that I think have the ability to deal with the billions of pages of medical records. The first is the Federal Government but due to the boom and bust of the budgetary process I prefer the telecoms because they are big enough, have the redundancy, the geographical reach, the competition, the bandwidth and their business model is based on providing reliable services at a low cost.
    Next we need to look at what is the correct paradigm to use for our medical records. This is simple it’s an electronic loose-leaf notebook that mimics a paper folder but has pages that can be forms or entire computer systems like an MRI system. A simple example would be using the Kindle II to access medical records. Because most physicians medical records are in paper form we need to get them scanned into electronic form and sent to the telecoms. This is labor intensive but requires little training; we could use the workers already being assembled for the 2010 census, providing a very quick stimulus effect across the country. This is not make-work because the unfiltered raw data is the most valuable form of information to researchers if searchable. The census worker leaves behind a scanner, a printer driver (to write to the telecoms) and an electronic certificate of use that allows secure and audited, reading and writing to the medical record. The electronic certificate of use controls the type of information the holder can view or update. For instance, a state worker that monitors lead levels may be able to add a report to the book but never read any information and the same would be true of a Department of Children and Family welfare worker. This information could have a direct impact on treatment choices. The census worker also performs an audit of what software systems that are currently in use at the office, for later when we convert to XML.
    At the hospital level we could use the same type of system as at the physician’s office but here since money is available we want to make use of it for future efficiencies. So the first step is to think of each computer system, medical device and medical personnel’s duties as steps in a workbook. The goal is not to run out and replace every computer system you have but rather to identify workflows and steps so that you can layer with an enterprise software service on top of whatever systems and procedures you are currently using. This is the best way to keep integration and training costs to a minimum. This first step sets the basis for measuring metrics across the hospital and after careful analysis selected systems could be replaced. The idea is that the use of EMR records can be implemented outside or on top of your current systems. Disk space is cheap and redundancy of information is not always a sin.
    At this point we’ve minimized the risk of movement to XML. The physician’s office has had time to adapt their workflow to electronic records, has probably replaced the paper folder racks with another examination room and may have had some cost savings. And they no longer have to worry about marrying an IT person to practice medicine. The telecoms are trying to sell all sorts of services like billing, automated reminder calls, electronic prescriptions the list is endless. The hospitals have identified its different workflows, decided where XML would benefit them and possibly received bids from different software vendors to wrap the individual systems either wholly or partially to take advantage of XML. Now it’s time to move to XML.
    The largest cost savings and reduction of medical errors comes not from the EMR record but from the workbooks. This type of workbook is really a best medical practice workflow, in it’s infancy it’s just an electronic record of symptoms, treatment and justification, sent to a third-party like a telecom. The purpose is to prevent a remake of the “Verdict” with Paul Newman except on the History Channel. But to do that the workbooks need to be created and maintained not by an individual software vendors or physicians but by a consortium of interested parties like the medical manufacturers, pharmaceuticals, medical associations, physicians groups and finally the Federal Government for an effectively rating. This allows for the creation and refinement of many backend programs that can check on the validity of treatments in so far as medical errors and options are concerned
    Next up are the healthcare insurance providers. Because the medical community has its own very precise terminology, what’s covered, partially, wholly or not at all by an insurer can be conducted in an XML contract in a matter of seconds. It should also allow the insurers to provide an alternative treatment to the patient. This provides the patient a cost with an effectively rating and maybe a couple of different optional treatments so the patient in consultation with their physician makes the judgment.
    We left the medical records as electronic medical records earlier we need to get them into EHR but I’m of three minds here. The first is that we could have done the conversion when the records were scanned in and using software and our census workers create the EHR, this provides the greatest stimulus to the most people. Or we could scan them in and have the conversion done in places like Elkhart, Indiana or other areas hard hit by this recession, because most people that have worked in a factory or assembly line already have the skills needed for XML. But we could also write software programs to parse, categorize, and convert the data to EHR which would produce valuable programs that could be used outside of our medical records, to XML and Artificial Intelligence programs in general. The programs are re-executable whereas using the census workers is more of one shot deal. The other thought is that when designing the XML processing procedures it should never be pigeon-holed into what we expect to collect for information. A notebook can have anything in it but a page or maybe even a chapter could be validated but it needs to be remembered this is a data collection system that must change frequently with the pathogens and treatments out in the field. Layered from the unknown but collected (notebook) to the known (page) outside in.
    Now the medical office worker, physician and patient all check the accuracy of the EMR. From the physician’s point of view, forms can now be filled out on the hand-held device, new features or workbooks appear tailored to their specialty and particular treatments. Perhaps a table of relatives allows access or just querying the patients relative’s books for pertinent information, but of course this is up for discussion. The hand-devices could now have barcode readers, GPS units and biometric fingerprint readers for drug auditing, security and for access auditing. Deceased people’s books are constantly being sent to the National Archives or CDC for storage and research, a little like donating your body to science without the yuck factor.
    Hospitals have spent there monies wisely, have color-coded hand-held devices so they don’t bring the wrong one into the operating room. But most importantly, they’ve changed from, a who can pay and who can’t, to true cost accounting and I don’t mean in the IRS sense. But we as a society need to actually advance not to just pay as you go. So therefore, charging ten dollars for an aspirin from an IT perspective, I can’t help you. However, if the reason you’re charging ten dollars is to offset the fact that you have a separate DBA for each database or you need 24/7 support there I can reduce your costs significantly.
    Finally, we’ve created a series of checks and balances in our healthcare engine that should help it stop leaking oil. We’ve given everyone a haircut to one degree or another but we’ve refocused on the fact that the goal of our healthcare engine should be on providing better healthcare for ALL Americans and that profits should be earned though innovation and hard work not just by exploiting leaks in the system or clever accounting.

  36. “It may have been an oversight, but patients and consumers have been left very much on HITECH’s sidelines. The attention and the money is squarely aimed at the health care providers – doctors, clinics, and hospitals.”
    Not the only place the patient has been left out. It wasn’t an oversight.
    We may get health IT (working or not – I bet not) but premium payers will not get cost reductions (especially from IT) for the stuff that really counts – healthcare. Money movers will continue to dominate and there will be no let up in the corporate health juggernaut set to squeeze every last dime from sick peoples wallets. BCBS is already positioning itself to fight tooth and nail against any reform that does not preserve it’s premium profits and executive bonuses.