Why Can't someone Give Me the Perfect Managed Personal Health Record (mPHR)?

I'm not as scared of dying as I am of growing old, Ben Harper, Glory and Consequence

Whether we admit it or not, most of us are afraid of growing old.  There is a sense of loss, of youth and vigor, coupled with the burden of managing your health in relative isolation.  Although as a country we would like to think that we are each responsible for our own care, most of us as individuals would prefer for someone to be there, helping us through our time of need.  Years ago when I was advising one of the Presidential hopefuls regarding a healthcare platform,  I suggested that the campaign should be propose that individual was responsible for their own health, but as a country we would partner to provide the tools for the individual to succeed.  Now, almost a decade later, we are not much closer to this goal.

Personal Health Records (PHR) were thought to be the answer.  These records differ from more traditional EMR in that they are owned by the patient and aggregate information from multiple sources to give a complete picture of the patient.  For example, they might include clinic visits from multiple providers, hospitalizations and updates on an exercise program.  Literally billions were spent on PHRs by the likes of Microsoft (HealthVault) and Google.  Both efforts were failures with thousands (in the single digits) rather than the expected millions of enrollees.  As noted by David Shaywitz, healthcare is a negative good, something viewed more with resentment than in anyway positive.  And that extends to things that keep us healthy.  To interact with your health means you are imperfect, you are mortality.

Rather than a PHR, I would like to propose a different tool, a managed PHR (mPHR).  This would be owned by the patient, but managed by a surrogate, a care coordinator (CC).  This person would be responsible to keep the person on track, taking their medications, keeping their appointments, explaining their illness (or at least research) their problem.  This may seem far fetched, by I believe CC will be a new job in 3-5 years.  And when this army of providers spreads across the land, they'll look for a tool to do their work.  And it won't be an EMR.  It will be a mPHR.

What would the perfect mPHR do?

Here is a list I've compiled

Upload data from disparate hospitals and clinics
It would store and view previous radiology exams
It would do med reconciliation and education
It would send reminders
It would manage exercise programs
It would allow differing levels of permissions and access...for the patient, the advocate and family
It would message those defined in the persons ecosystem if the PHR identifies a down trend.
It would report on utilization and changes in utilization
It would collect biometrics including wt, BP but also depression and pain indices with reporting and messaging
It would link/suggest support groups based on the problem list
It would leverage secure texting and email for messaging
It would be platform agnostic & cloud based

The critical thing here is actually not the functional requirements...these have already been fairly well defined...it is the ability to easily work with surrogates and family while maintaining some level of choice and control by the patient.

This is not an idle ask.  I am now working with a developer building senior communities with integrated care and care coordination.  I can buy an EMR, but not an effective PHR for these communities.  With any luck at all, we will be managing thousands of lives in these communities in the next few years.

To all you bright entrepreneurs out there, help me out.  Build the perfect mPHR.  If I am right, and there is a lot of evidence I am, you'll transform how we care for one another, and make a lot of money doing it.  I won't be your only customer.

Can We Make Personalized Medicine...More Personal?

Personalized medicine (PM) is in vogue.  As discussed in Eric Topol's book, The Creative Destruction of Medicine, most use PM  interchangeably with designer drugs.  However, these customized drugs are expected to based on your genetic code, and presumed to more effectively treat cancer and other chronic conditions with fewer side effects.    

I support this approach.  Today drugs are made for the masses.  They are not the most efficacious, nor the least risky.  But they can treat most people most of the time. Limited risk allowing allows for a scalable go to market strategy.  However, custom drugs are not the same as risk free drugs.  There is no free lunch in life, and healthcare.  Complications will continue even with the most tailored therapies.  In some sense, PM is just another expression of medicine "American style," suggesting if you throw enough technology at a problem, the problem will go away- if only.

Another version of PM looks to measure the patient.  Though a series of devices, from Fitbit to blue tooth scales for obesity and heart conditions, the "quantified self" can learn, change and improve.  Customized intervention is presumed to follow.  Except for a few medical conditions (CHF and COPD, ...not diabetes), this approach has not been a viable business model.  Most of the devices have been relegated to the Super-fit, a small, selected and (to most of us more sedentary) annoying sub-population of triathletes and overall smiley do gooders.  The market is largely based on income for luxuries rather than related to healthcare.  I have always been surprised how one biometric, well-being, has largely been ignored.  How the person feels (are they in pain, are they depressed) could be gathered via texting or automated phone calls.  These issues have as much to do with health and long term value as blood pressure or weight.

Ultimately, truly personalized medicine requires the patient (or even better, the person), to make a choice about their care.  Today, choice is visibly absent.  A risky and painful therapy may be right for someone wanting to see their daughter wedding, but completely wrong for another.    Even codified issues of medical consent remain murky.  Before surgery, how many of us truly understand are options and the predicted outcome of each choice?  Most physicians have typically arrived at a decision before offering consent.  The process becomes more of a legal requirement rather than an opportunity for choice.  These small decisions lead to an unintended destinations so pervasive in healthcare. Patient satisfaction suffers, while simultaneously utilization increases with little perceived value.

The dialogue around personalized healthcare is needed.  However, let's not make it simply an extension of the current techno-medicine culture.  There will always be pain and suffering- and ultimately (say it ain't so in America) death.  To truly personalize medicine, a relevant discussion about the risks and benefits of every drug, every surgery, every choice would put the "P" in PM.

The best deals in cars and care may be found at the end of the month.

I have been a physician for almost 20 years, and my income has been going down- a lot.  With the rising cost of insurance premiums this might seem counter intuitive to many Americans.  However, there is an explanation, albeit a perverse one, that helps explain this disconnect.

There is no cost of care.

Unlike most markets, there is no fixed price for care.  What you pay depends on whether you have insurance, the terms of your insurance and  the rate that has been negotiated on your behalf. Different insurers negotiate different rates for the same service.  For instance, a CT scan or blood work may be paid at a factor that is 2 or 3 times more than another insurer.  In part this has to do with other services the insurer needs.   For example, access to specialty coverage may be offered by a care delivery network to an insurance company in exchange for higher reimbursement on other services.

Rather than bill everyone at the lowest negotiated rate, not surprisingly hospitals tend to bill at the highest one.  Everyone gets caught in the same net. The hospital don't want to miss out on the highest possible reimbursement for a particular procedure.  Unfortunately, the person least able to pay, the uninsured patient, gets billed for the largest amount as well.


Imagine if Walmart's everyday low price depended on your ability to pay?

   My salary is made up of a mix of payers- payment for the same CT scan can vary widely.  Lately, my practice has seen increasing volumes, some decrease in insurance reimbursement/case, and a large increase in the ability (or willingness) to pay for services by the uninsured.  Based on the mix (insured and uninsured) we now collect something like 28 cents for every dollar billed.  Imagine if Walmart collected 28 cents on the every dollar?  I am betting prices would go up.  This  isn't good for me, and it isn't good for the consumer.  

Given the large uninsured population of my downtown hospital, some analysts predict Obamacare may actually improve this 28% reimbursement.  This presumes reimbursement for each case will decline, but  the portion of charity cases will decline more- everyone will be insured.  However, with the same size pie, this will have short term issues for other segments of the market, and is not sustainable. 

Fair care at a fair price- the end of the month, cash may be king.

Like many things in American healthcare, the billing system is byzantine, kluged together with no real thought or roadmap.  Until we deal with this fundamental disorganization, I expect the general mistrust between patients, physicians and insurers to rise.  Insurance premiums are currently viewed as a surrogate for physician salaries.  This is simply not true.   Medical costs have gone to such extremes that the number of Americans with no insurance is rapidly expanding and now make up an increasing pool of reimbursement.  Ultimately, we have to pay for care if we want to have services moving forward.  I would far prefer to get paid a fair price by all patients.   When you are sick and most in need, adding financial pressures fundamentally seems wrong.  

Ideally each bill would be somehow be "patient centric."   However, today's financial tools do not allow this level of service.  What I can tell you is that hospitals and providers have a discounted price, one that is much closer to their cost of business.  Asking for a negotiated rate, particularly for the uninsured/self pay, will likely to be met with interest.  I am not sure what this rate is but it is something less than 100% and more than 28%.  And sadly, like car dealers, from what I have been told, the best deals may be found at the end of the month.

When to do a medical procedure when the patient is on aspirin- the answer is..that depends on their risk profile and mine.

        I was asked to do a procedure on a patient taking aspirin.  Aspirin helps prevent heart attacks and stroke but it also promotes bleeding - not good when a doctor is going to use a sharp object like a scalpel or needle on you.  Although the data is not clear, my hospital has a policy to wait 5 days off aspirin if the reason for the procedure is not life threatening.   but this can result in delayed care and patient inconvenience.  Guidelines leave room for clinical judgement.

This is a relatively simplistic example of a broader care issue.  There is no free lunch in healthcare.  Almost everything providers do to patients have the potential to harm.  This may be radiation exposure up through serious complications or death from a simple biopsy or surgery.  How patient's view risk varies.  It seems ironic that we spend more time asking people about their investment risk strategy, than their ideas about health risk. Ideally, providers would know their patients, and something about their willingness to accept risk relative to care options.  

A provider's risk profile is also unknown.  Some seem to be afraid of their own shadow, practicing as if there is a lawyer in the room.  Others are less risk averse, willing to forgo even recommended tests if they feel there is limited value.  In one practice I know of there was a 10 fold difference in mammography call backs comparing senior, more experienced and assured, radiologists and their junior partners.  The art of medicine more than occasionally equates to provider preference.  American healthcare is far from evidence based.  Treatment decisions are strongly influenced by the risk tolerance of provide, what they are willing to miss both for the patient's benefit and (medical-legally) their own.

Ideally there would be time for patients and providers to know each other better.  However, until there is a change in the financial pressures and fragmented care, perhaps healthcare can borrow from the finance industry.  A shared assessment of risk tolerance for both patients and providers might allow a better care match.  Although modern healthcare is often viewed contentiously, care decisions should represent a social contract between a patient and their provider, a willingness to try and move forward in partnership.  There is no guarantees of good health, but at least decisions should align with personal choice. 

Telehealth proof before payment- an antiquated barrier to care

     Telemedicine (tmed) has moved from technology to an opportunity for care.  Where there is limited access to experts (eg...rural stroke care), it is compensated- the right person at the right time can make all the difference.  However, widespread adoption of has been limited by two critical issues. First, licensure issues limit providers from crossing state lines.  Second, and more importantly, payment models are complex.  The same rural service delivered may not be paid for across town in a city.  Additionally, reimbursement for virtual care may be possible for one condition but not another in the same rural hospital.
    Parity legislation attempts to simplify these issues. In short, parity legislation requires, in fact mandates for private insurers, that the same billing codes apply whether the patient is seen is an office or on a computer. Almost every State is considering some form of this legislation.  Unfortunately, “mandate”  equates to cost for many legislatures and most insurers.  Mandate is viewed as a 4 letter word.

    In an effort to slow parity legislation, payers have suggested there needs to be proof tmed’s value related to specific clinical scenarios before payment.  Although this makes sense new drugs and devices, I am less certain it applies to tmed.
    Ultimately, healthcare "value" depends on 2 people- the provider and the patient.  The provider needs to be comfortable they can adequately assess the patient. This may require a physical exam, but more often providers need to see the patient and hear their concerns.  For most patients, a visit to the doctor is about reassurance, getting a sense that their cough isn't cancer, that the pain they feel is normal or worthy of further investigation.  If the provider or the patient feel a virtual visit is insufficient, either can choose to have the visit become an in person experience.  For the cost of one emergency room visit,  we could buy 50 to 100 virtual visits.  Access manages disease before it requires expensive tertiary care. Value is not determined by physical presence, but rather the communication, relationship and ultimately the patient’s outcome.      
    Virtual care offers an additional advantage over the standard office practice.  By eliminating physical barriers, care coordination can improve.  Many chronically ill patients have between 12-18 providers, most whom never meet or talk about the patient.  Leveraging mobile devices, care teams could be together, reducing costs and improving care.

    An alternative approach to no proof/no payment might be a stage introdcution for virtual serivces.  Allow reimbursed, but set a limit for a certain number per month per patient.  This would enable providers and patients to discover the most cost effective virtual alternatives while limiting the perceived financial risk to the payer.      Allow market forces to determine the best possible solutions rather than stifling innovation.  To compare tmed to traditional care would take years of work and thousands of patients.  And in the end we would be left with an ever evolving, and confusing landscape for virtual reimbursement.
    Healthcare in America is in transition.  We are moving from transactional care and reimbursement, get paid for what you do,o shared risk, wellness model.  Virtual care is one of the many tools that can help improve the care/cost curve moving forward.  Hopefully antiquated thinking will not limit tomorrow's possibilities.

The Rural Drive-By...Not as Loud but Equally Deadly

Drive-By’s are happening every day in Rural America.  In this case, it's the resident driving by their local hospital in favor of the city.   Viewed as good enough for the sniffles, but not for more serious issues, rural medicine has an image problem.  Unfortunately, it's hard to make a living treating the sniffles.  Mixed with the sprains and cough, there needs to be cancer patients, heart disease and kidney failure.  And ultimately, as goes the hospital, so goes the economic health of the community.  The rural hospital is often the primary direct and indirect employer of the town.

Keeping the patients they can, sending those they can't

A rural hospital can not compete with their urban counterpart.  Size matters for sub-specialization. Academic center of excellence with cities.  These factors determine "brand" for the consumer.

Ideally, rural centers would work in close collaboration with urban centers .  I am not suggesting a moniker on a building ( "X" Community Hospital in partnership with University of Whatever).  There should be a close relationship where the patient sees equalivant care delivery.  

Ideally, patients would see and talk to their specialty nurses and doctors at their local facility.  Travel would be reserved for serious issues- surgery, advanced radiation.  Infusion, follow-up imaging and other recurrent services would be performed locally but overseen remotely.  This provides shared revenue model for the urban and rural center while the patient gets convenience and reassurance. 

Nerds don't live rural....healthcare as a managed service

Telemedicine (tmed) is an enabler of this vision.    With tmed, the patients can meet and review their results with an oncologist hundreds of miles away.  The nurse from the city can be there during chemotherapy.  When it's time for a bone marrow, it's time to drive.  

To date, tmed has been an expensive proposition.  First, there is all that equipment to buy, and then you have to find a nerd (to feed and water the technology). Nerds are hard to find in small towns.  But, things are changing.  The cloud, aka...servers in the sky, can delivery tmed to a PC or handheld, over a browser.  This frees providers to manage patients, not technology.

And , the timing is good.  The telcos are starting to see an opportunity.  Providers can purchase healthcare infrastructure as a subscription.  Get your movies, your EMR, your system for referral and collaboration, etc..all as a monthly subscription, everything kept up to date, HIPPA and HITECH compliant.  No local nerd is required.

Rural hospitals are integrally to the economic health of their communities.  Unless we want a country of urbanites, care delivery models must evolve. Rural centers should keep the patients they can and send only those they can't.   Collaboration enables better care, patient reassurance and revenue sharing.  Technology has evolved to execute on these business imperatives.  We just have to think about care differently. 

Topol's Healthcare in American - At a Crossroads of Innovation and Ossification

I recently read Eric Topol’s Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care.  I highly recommend it.  Dr. Topol’s main premise is that innovative deconstruction of people (patients) into their more base components- (their DNA, RNA and proteins), will help us design better, more personalized treatments for a host of diseases.  

This relates to the science of pharmacogenetics, how our genetics individualize our respond to drugs.  This is in contradistinction to the current pharma model- treat as many people as possible even if the benefits are modest for most.  

Unfortunately, as Topol points out, medicine as an institution, and physicians in particular, have not kept pace.  The system is relatively ossified.  Through a combination of bureaucracy and tradition, medical education has not changed substantially since the last great paradigm shift, Flexner Report, in 1910.  In the face of an information explosion, the subjects I studied in medical school 25 years ago were similar to those my father learned 50 years ago.  Unless something drastic happens my daughter, currently a pre-med, is likely to have a similar curriculum.  This results is a type of healthcare delivery focused on the hospital, not the clinic, emphasizing the heroic not the chronic.  In part, this mismatch has lead to the US spending almost twice what other nations spend for healthcare with no perceptible benefit.  This is not sustainable.  Of course today’s medical students and residents are more likely to Google for answers than open a book.  Physicians no longer have to be walking encyclopedias.  However , the system continues to value test taking over personality.  I personally believe the best test takers do not make the best providers- just the opposite.   

The book regrettably gives short rife to telemedicine and opportunities for collaboration.  With the information explosion, no single provider can have all the answers.  More granular data will only exacerbate this problem.  Healthcare is moving from a one on one sport to more of a team game.  In order to have a sustainable delivery system, each provider will have a role to play to fully realize the value of new, personalized therapies.  Telemedicine can be leveraged to bring the healthcare pyramid, stratified expertise, to the bedside.  Most people think of this as expensive, limited technology.  However, browser based solutions allow telemedicine to be done over devices in your pocket.  Teams can be brought together to enable the right care at the right time.

Overall, I agree with Topol’s primary assessments- granular data will allow more effective, personalized treatments, and that the current educational and care delivery models are ill prepared for these disruptive innovations.  However, ultimately personalized medicine will be a combination of technology and choice.  No therapy, no matter how elegant, is without risk.  The past few decades have taught us that just because we can do something, even extend life, doesn’t mean we should.  The role of the provider and the team will be to understand the patient, their desires and act as a translator in this brave new world of personalized medicine.