Death by Data- How Healthcare Providers Went from Historians to Librarians

Thirty years ago, in what might be referred to as BPC (before the personal computer), I took a class asking whether technology made our lives better or worse.  The topic seemed absurd, but it fulfilled a graduation requirement.  The professor from Bell Labs was part techie, part philosopher.  By the end of the semester I didn’t throw away my Walkman, but I also thought the question had merit.  Then I went off to med school and, for the most part, was able to forget about technology- everything was on paper. 

In medical school I learned to review the medical records (huge binders often marked by roman numerals designating volumes related to a patient) and to take a history.  Listen and the patient will tell you the answer was the mantra.  The patient’s problem was a narrative, a story of what happened to them in the past, and how it might have contributed to the present.  The treatment plan was the hoped for future.  Ideally, this all fit into a story that made sense.

Towards the end of my residency, electronic medical records(EMRs) began to appear.  This made sense.  Huge paper binders were difficult to review for a patient and essentially impossible for clinical studies.  However, EMRs were not built to tell a story but rather enter data.  The earliest EMRs were more for collections (revenue cycle) rather than care.  The narrative, the patient’s story was almost an afterthought.

Most of us are familiar with the clinical result.  Providers often has their eyes on the screen rather than on the patient.  Even if the right questions are asked, the information gathered fills tiny boxes, more like books in a library, rather than constructing a story.

Recently Melissa McCormack, a medical researcher at Software Advice, blogged (http://thehealthcareblog.com/blog/2014/01/06/actually-wed-all-be-better-off-with-our-health-records-on-facebook/) asking why medical records couldn’t be more like Facebook, an information timeline (note, she was not suggesting FB become a medical record, but rather EMRs borrow from the structure of FB).  I agree.  Current tools gather data with no real consideration of purpose, of constructing the patient’s narrative.  Stories can be told.  FB has shown it’s possible.  The medical community just needs to think different.

In Greek Mythology curiosity gets the better of Pandora. She opens a box she’s warned not to.  In doing so, bad things fly out- war, disease, envy, etc…She quickly closes it, but it’s too late.  When she opens it again, only thing left in the box is hope.  The question raised by my professor decades ago is truly academic. There is no going back.   We can’t live with technology.  However, technology needs a governor, a brake that ties it back to the problems it is designed to solve.  Data for data’s sake may not make our lives better.  Without constantly considering people and process, we run the risk of making things worse rather than better.  Nothing against librarians, but I would prefer to go back to being a historian.

Healthcare Technology Should Be about Enabling, Not Replacing, People- why it's less about the app and more about the process.

My friend Lisa Suennen recently wrote a thoughtful review of the Computer Electronic Show (#CES) http://www.venturevalkyrie.com/2014/01/11/people-who-need-people-a-ces-follow-up-report/5961.  For those of you unfamiliar with the event, there were more than 2 million square feet of exhibits and roughly 150,000 people last week in Las Vegas.  Digital Health is part of a broader offering covering all things tech.  Amongst all these glittering objects, the of envy for any true geek, Lisa had several interesting observations.  First, that many health entrepreneurs are (as she notes, wrongly) looking for ways technology can replace people, rather than enable people.  There is a general sense that scale (a magic word for the investment community) requires fewer bodies.  Second in her opinion, the ultimate goal should be a mash up, a convergence of IT, devices and services for true value.  I couldn’t agree more.

My efforts focus on collaboration.  Within health IT is what seems obsession with data, EMR’s and dashboards, but for me the future is about teams- getting the right people at the right time to come together.  Without this opportunity for timely expertise and collaboration, the value of data decays.  Information has trouble converting to knowledge.  However, collaboration is messy.  It requires thoughtful consider of how people and process interact with technology.

Replacing the Pager with a PDA.

For decades the pager has been the official form for medical communication.  It is safe and secure.  It is also limited, inflexible and a poor choice for collaboration.  In response, many physicians have adopted texting as an alternative method of communication.  However, as of September 2013, new federal mandates limit texting.  There is a potential 50,000 penalty for texting a single instance of patient information being exposed in an standard text.  The response by many vendors has been ….I have an app for that, to wrap messages in a secure technology.  However, an effective solution needs to be far more nuanced.

In the consumer space, apps can go viral.  However, the social fabric and supporting infrastructure for healthcare presents a number of obstacles.  There is an assumption that all providers will have a PDA.  However, PDAs at work are expressly forbidden by many nursing regulations.  This means messaging must be cross platform.  What if an individual doesn’t want their PDA to be leverage for work responsibilities; is the hospital required to provide a device?  Many hospitals do not have have the necessary wireless/cellular infrastructure to support PDAs.  Most hospitals do not have accurate information on their providers beyond pager numbers and an office address; snail mail remains the de facto form of communication.  

For their part, physicians often do not want to be reach directly.  In part this is a workflow issue.  Imagine a physician is in surgery and receives a call telling a patient needs their attention immediately.  Do they leave the surgery, or stop the surgery and call someone to cover?  There are reasons for call centers.  Practically, there needs to be permissions set by time of day, availability and role for the collaborative communication to be appropriately routed.  This requires high level enrollment into a “service” identifying roles and managing preferences.

The result has been islands of communication.  Groups have adopted apps for internal communication but no real holistic community of providers for collaboration. With the help of a vendor (disclosure- I have invested in the company, #Emerge.MD), St. Joseph’s has deployed a technology enabled service helping people to collaborate.  This service enables provider collaboration by name (eg...Dr. Jones) or by role (neurosurgeon on call).  It incorporates nursing requirements (for desktop messaging) as well as physician preferences.  Via this service teams of people can be brought together text, voice or video.  Importantly, there is sponsorship from a business owner, the hospital and more broadly the Accountable Care Organization.  The executives have something to gain- more cost effective care (throughput issues, access to specialists, etc…). This solution is now spreading through Dignity Healthcare. However, this was not plug and play.  It required extensive knowledge about the people and process rather than strictly technology.   

Even replacing an archaic device, the pager, with a PDA is not about technology but rather about understanding and management of a constellation of social processes. At the end of the day, health and healthcare are personal.  There are many processes that can be automated and improved upon via technology.  But for my money, I am with Lisa.  Transformation will be more about enabling rather than replacing people.   And people require services, not technology.

The Doctor is Always Right- Except When They're Not- Bias, Myth and Paternalism in Medical Decisions

A friend of mine was kind enough to drive his 85 yo mother to get a colonoscopy.  She had a normal study 18 months before.  There was some evidence of minor bleeding & her doctor just wanted to be sure.  This meant the "prep," with instructions to drink the last bit at 3 am, followed by a trip to the doctor's office at 530 am.  Another friend was told they had melanoma.  As you might imagine, this caused concern.  The doctor recommended a biopsy followed by 2 additional surgeries.  When I asked what stage melanoma, I was told it was stage zero; in terms of danger, this is just above freckle, the lowest potential for growth.

Both examples represent common medical experiences. In each case, there was an alternative- do nothing. For the older woman, it was reasonable to ask what the doctor expected to find and, if bad, what would be done about it.  I personally want to die with an undiagnosed cancer.  In the second example, surgery for the “near benign” required pain, risk and expense.  If removing the lesion via biopsy gave a 98.5% chance of not getting the disease, were the 2 surgeries worth the incremental improvements?

Each situation gets to the heart of "consent."  Ideally every procedure offers the patient a real choice.  After explaining the risks, benefits and alternatives, the patient chooses to proceed.  However this is rarely done.   Bias, myth and, on some level, well meaning paternalism all play a role.  

Bias- Mental tendency or inclination, especially an irrational preference or prejudice

Imagine spending 20 years learning a trade.  It is natural to believe you are helping, not hurting.  Physician's believe in their art. To expect all options are equally considered, goes against human nature.

Myth- a widely held but false belief or idea.

Although medicine is shrouded in science, we often do what we do because we do them. Practice is passed on from generation to generation. Many things are taken as "truths," without any real justification.  A recent Mayo Clinic Proceedings reviewed reversal of a 146 contradicted medical practice (MCP, August 2013). Medical knowledge is purported to be based in science but in actuality, this often not the case.

Paternalism- Though I walk through the shadow of death, ...thou art with me, thy rod and staff to comfort me. Psalm 23:4

Rod of a healer

It is difficult for both providers and patients to have a conversations as equals.  For the patient fear and anxiety go hand and hand with illness.   This is overlooked by those thinking computers will replace providers in the near future.  Most patients do not want to make life threatening decisions alone.

Providers may feel pressed for time and a responsibility to act as a filter for their patients, leading them to the right choice.  Unfortunately, well meaning desire can often result in an unbalanced discussion.  

In Seinfeld, Elaine was blacklisted as a bad patient.

I should note that most providers are not consciously motivated by financial gain.  Yes, treatment results in payment, but the vast majority of people believe that they are offering the best option.

What to do…Ask- what are you getting for the risk, what is the downside to waiting?

With all these well meaning forces, I would suggest a relatively simple approach of asking and when possible, consider watchful waiting.  For many patients, asking is intimidating.  There is a fear asking will degrade the relationship.  Most physicians are willing to explain there reasoning; and if they won’t, get a second opinion. Definitive answers are not always the best answers.  Finally, ask the harm in waiting.   Avoiding risk today may be better than possible risk tomorrow.

Congrats, You've won a shopping spree. Unfortunately, the stores are closing. Why you should worry about Medicare instead of Obamacare

After 30 years in healthcare, a someone finally explained Medicare to me.  Here is the short version. There are 4 parts (A,B,C, & D).  At 65 most Americans get parts A and B.  Part D is for drugs; the senior can be responsible for several thousand dollars/year.  Part C is the interesting one.  

"C" coverages lab, X-ray, hospitalizations, doctor visits, emergency transport- most things commonly thought of as healthcare.  You can choose to keep Part C which is free in most geographies or add a supplement reducing or eliminating co-pays.  Most seniors choose supplement plan "F."  For another $130/month (with the required $104 for Part B this brings the total to $235/month), the senior has access to any primary doctor or specialist, any hospital network accepting Medicare with no additional charges.  This is fantastic coverage.  I pay almost 10 times this amount and still have a deductible.  This is like a an unlimited shopping spree for a buck.  But unfortunately, many of the "healthcare" stores may be closing.

Here is the problem.  The healthcare costs a of money a lot more than $235/month.  The government has 2 choices.  Additional revenue could be raised, effectively charging seniors more for similar coverage.  This is DOA. Politicians like being politicians.  They, like most of us, think of themselves first.  Reducing entitlements, particularly Medicare, is suicide.  Alternatively, expenditures could be reduced.  This is what has been happening.  Hospitals, doctors, device manufacturers, labs, etc... are all being paid less.  

Although a popular public option, this may not be a good long term strategy.  Yes, the healthcare industry is bloated and mismanaged, but inefficiencies are not going to disappear easily.  As prices fall, businesses are going to fold- fewer hospitals, fewer doctors, less innovation.  I am not suggesting healthcare will disappear, but rather access will decline.  Like in any business without profit, store shelves become bare.  Politicians will keep their jobs.  Entitlements will be left untouched, but simply worth less. 

This has a ripple effect.  With all the dialogue around Obamacare (ACA as it is now again being called), it is easy forget the vast majority of expenditures are for the elderly.  Medicare is untouched.  If reimbursement for Medicare results in fewer choices and less access for the elderly, this will directly affect those participating in Obamacare; it's the same delivery system.

The ACA presumes all Americans need to pay for healthcare.  Although there is (bizarrely) not general agreement on this point, most believe a civilized society requires roads, schools and police, & care for the sick.  However, by segmenting the population into 2 groups (pay as you go for <65, and pay once for all you can eat for >65) seems destine to fail.  Ultimately every group must have some skin in the game when making medical decisions.  I am not suggesting the elderly should bear the full cost of their care but rather that price for care should be part of the decision.  When the doctor suggests a course of action, price should be at least part of the conversation.

Forget Obamacare.  It's a fly on the elephant's back.  American's have much bigger problems.  We need leaders who argue for what's right for the country, not for their careers.  We need lobbyists (yes, you AARP) who recognize that saving money for their members today may mean fewer services tomorrow.  People of all ages should pay something for more care.  This is the only way to actively engage the consumer in the decision process.

Do Patients Want To Be Customers?

A close friend of mine is unfortunately no stranger to healthcare.  A missed diagnosis was followed by a botched surgery leaving him with chronic pain.  He has sought help and largely been offered pills and more surgery.  Most recently, he had a cough and fever.  Going to his doctor he apologized, noting he did not have an appointment, but was worried. His doctors response- no problem, you’re a good “customer”, I’ll get you a script for some antibiotics.

For many of us in healthcare, this might have seemed a benign exchange.  After all, we are being asked to think about patients more as customers, to offer a higher level of service and follow up, and ultimately provide value around the the services we provide.  However, patients may view this differently.  In my friend’s case, this was an epiphany.  At that moment, he lost all faith in his physician and in fact began to generalize about providers generally.  If his doctor saw him as a source of revenue, someone who would be back for repeat business, what did that mean about all those appointments to follow?  Up till that point, my friend thought their relationship was based on mutual goals, working together to solve my his healthcare problem.  Disappointed and angered, he fired his doctor on the spot.

There seems to be a disconnect.  As providers, we'd like to think we are at Maslow's level 4 (self-actualization), or at least level 3 (psychological needs), but we are at level 1 (basic needs, survival mode). 21st century healthcare offers more than ever before, but in exchange for treatment options, the business of healthcare has now replaced what most of patients want- a partner to help them through some of life's greatest challenges.

I don't believe most providers consciously think of patients as opportunities for revenue.  However, I would be disingenuous to suggest that at time providers become overwhelmed and forget their work is their patients. Further, growth decisions, which lines of business to support and grow at a hospital system level, are in financial justifications.  And for their part, today’s healthcare environment requires patients must take a more active role in their health rather than expecting things to be done to them, magically making them well.  

Today we seem stuck at the lowest level of the hierarchy, what I'll call the impersonal "other" for lack of a better word.  The next level up would be customer, someone valued as an opportunity for a long term relationship rather than a one time transaction.  At this level, we would treat as if we want people to come back.  Currently, unlike most businesses, there is no follow up in healthcare.  We may not be able to get to the third level, where the goals of the doctor and patient align.  Perhaps someone can create a business model successfully executing on this vision.  If they do, they'll be very successful.

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.