A Star System for Hospitals – Helping Patients Make Informed Decisions

Warning!  

Accessing health care may cause the following: 

• Death - Medical mistakes are the fifth leading cause of death in the US
• Harm - As many as 25% of all patients are harmed by medical mistakes
• Injury - 3-17% of patients will experience an injury as a result of their care
• Unnecessary Procedures - Approximately one quarter of all medications and medical procedures may not be necessary
• Unnecessary Risk - Many patients who are candidates for minimally invasive surgery are never told of their options and instead have more extensive surgery with greater risks

According to two highly regarded health care experts in the United States, we should all be better informed advocates for our health care.  In fact, an empowered patient is seen by both learned professionals as a key driver to improving quality and avoiding being one of the statistics above.

Wouldn't it be great if we could research the quality of our hospital before we go in for elective surgery, in the same way we check out a hotel or restaurant before we go there.  What about a ‘star-system’ for hospitals?  Secret shoppers/patients?  Anonymous critics?

In his book, Unaccountable, Marty Makary, MD chronicles what hospitals won’t tell you and how transparency can revolutionize health care.  He shares a great deal of frightening anecdotal evidence from his years as a resident and is a vocal advocate for ‘sunlight being the best disinfectant’.  

Dr. Makary makes a compelling argument for hospitals publishing a range of quality indicators including:

• Bouncebacks (readmissions to hospital)
• Complication rates (e.g. what is the post-surgical infection rate)
• Never events (e.g. having surgical equipment left inside of you or operations done on the wrong part of your body – should NEVER happen)
• Safety culture scores (% of hospital staff who would want to have surgery at the hospital they work at – yes there are surveys out there that capture that) and;
• Hospital volumes (how many surgeries does the hospital do in a year – practice makes perfect). 

Dr. Makary promotes ‘open notes’ as one solution to the quality crisis in health care.   “Being able to review your doctor’s notes in writing might be even better, particularly if you could add your own comments, perhaps via the web.  Transparency plus collaboration puts patient and doctor literally on the same page so people no longer have to wonder what their doctor is thinking or whether it radically diverges from what they understood.”

Donald Berwick played the role of critic in his book, Promising Care How We Can Rescue Health Care by Improving It.  Donald is past president and CEO of the Institute for Healthcare Improvement (IHI) and is a well-recognized expert on healthcare quality internationally (currently running for Governor of Massachusetts).  In his recent book in the chapter ‘My Right Knee’, he tells the story of his own experience with the healthcare system when he required knee surgery.  If you only read one chapter of this book, read that one (although the entire book is excellent).

Donald puts into print what all of us would like when we are faced with surgery, an agreement with the surgeon on what he/she will/will not do.  This was what Donald (international expert on health care quality) wanted from his surgeon:

-        No needless death – don’t kill me

-        No needless pain – don’t hurt me

o   Don’t do stuff that won’t help me

o   Don’t repeat things that have already been done

o   Don’t leave me worse off than when I arrived

-        No helplessness – don’t make me more vulnerable

-        No unwanted waiting – my time is as important as yours

-        No waste – give me effective, efficient, necessary care

In one of his IHI keynote addresses published in his book, Donald spoke of his personal experience as a patient and in so, provided a solution to reducing health care quality risks.  “The two most important ways to prevent helplessness are to share information with me and to give me choices.  First, keep me posted.  That’ll begin with my medical record.  No one can touch my knee who won’t give me my medical record to read anytime I want it, no questions asked, and no delays.  Better yet, let me keep my record with me, and I’ll let you use it anytime you want.”

These are two great books that everyone should read.  I accidentally read them back to back and was impressed by the common elements that these two experts shared.  While they often present polar opposite perspectives of the same problem, (one glass half full, one glass half empty) both are right.  After reading Makary’s book I would be afraid to enter a US hospital but after reading Berwick’s book, I’m reassured that quality abounds in the system.  One shining a spotlight on the problems one focusing on the solutions, both recognizing the importance of patients advocating for quality health care. 

Your Health.  Your Health Information.  Manage it Well.  

Healthcare Reform - Your money and your life

Two interesting healthcare questions have emerged in the healthcare debate recently that are important as we step into 2014. Forbes magazine (@PaulHsieh) asks “Is it your doctor’s job to save money for ‘the system'?” and the Atlantic (@MeghanMcCarthy_) “Should doctors be paid if they don’t keep people healthy?” I will address Meghan in another blog, Paul provided too much fodder to cover them both in one. 

Is it your doctor’s job to save money for ‘the system’?

Hsieh opens with the scary anti-socialist interpretation of publicly funded healthcare (Medicare in Canada and Obamacare for you guys to the south) with dire predictions that your government will decide what health care you may receive.  I think, Paul, the AMA (American Medical Association), will have something to say about that if even a faint whiff of government control seeps in (which it never will).  Canadian Medicare was created to provide all citizens access to reasonable care.  If you compare our two great nations, we have higher taxes in Canada (get used to it) but we don’t have crippling insurance fees and we have a much more accountable system, lower per capita spending and better health outcomes.  Canada is far from a perfect system but the American model, under any level of scrutiny, is worse.  Let’s address your four (4) points and highlight some questionable assumptions:

1. Doctors will be increasingly expected to save money “for the system” – good grief, I hope so and you should too.  ‘The system’ is going to be funded through your tax money and if doctors in the US continue to over serve and over bill their patients in the new system (lots of great articles in this New York Times Series ‘Paying Till it Hurts’) then yup, you guys will be in big trouble.  So, you need to put some safeguards in place; standardize the pricing for services; adopt a reasonable standard of care for patients.  ‘Appropriate Use Criteria’ is not evil but doctors bilking insurance companies for thousands of dollars for unnecessary tests (creating an increasingly illness focused, paranoid population) is certainly unethical.  If you can’t trust your doctor to put your best medical interests first, time to find a new doctor.  As a Canadian, it wouldn’t even cross my mind that my doctor wouldn’t put my best interests first.  What the hell is wrong with your doctors that you (a doctor) would even suggest that your colleagues would put government interests ahead of patient care?  And why aren’t they protesting outside the Forbes offices for an apology that you would even suggest such a thing? 

2. This will further fuel the nanny state – individual freedoms will be restricted if they are too costly to society.  This is Paul’s reference point: “As writer Steve Schweitzberger observed: “If Michael Moore has a toothache, it is not my responsibility to pay for his dentistry. If it were, then I would have the right to tell him not to eat sweets. I don’t want that kind of government-paid medical policy. Do you?””  @Forbes, do you guys not fact check?  Steve Schweitzberger wrote a Letter to the Editor of the Rocky Mountain News in 2007 that doesn’t make him a writer.  And, the letter was in response to Michael Moores documentary on Columbine and gun policy in the US.  Mr. Schweitzberger’s daughter escaped the gun fire and is an advocate of more liberal gun laws so citizens can protect themselves which makes him a perfectly credible (albeit biased) reference for an article on gun control but healthcare??  Shame on you Paul for misleading your readers with 7 year-old quotes from gun-rights advocates, couldn’t you find a relevant quote from, gee, someone who is actually talking about legitimate impacts of Obamacare?  Don’t make up fear mongers, there are plenty out there and it stains your credibility. 

3. Health benefits will become increasingly politicized – we agree.  We experience the same in Canada with each province controlling the ‘menu’ of insured services and some level of differentiation between jurisdictions.  While you highlight a few variances (and there will be more), what constitutes ‘essential health benefits’ can be identified and put in place, that is the meat of it.  Lobbyists will abound and policies will be impacted – report on that it’s an important debate, it just hasn’t happened yet.

4. Sooner or later, government spending Other People’s Money means the government taking your money – agreed.  Your taxes will go up.  Paul likens access healthcare to cell phone coverage implying that a free market approach to healthcare makes for healthy competition and lower costs.  Paul, you do realize that Americans have the highest per capita healthcare costs in the world (and some of the poorest health outcomes)?  The Organisation for Economic Co-operation and Development (OECD) reports on health spending and health outcomes globally (they kind of rule the evidence in this space).  “In 2011, the United States continued to outspend all other OECD countries by a wide margin, with the equivalent of USD $8,508 for each person.  This level of health spending is two-and-a-half times the average of all OECD countries and 50% higher than Norway and Switzerland, which were the next biggest spending countries.”  And if that isn’t bad enough, the health indicators used to measure outcomes globally show the US performing below the OECD average in most areas.  Here’s a few snippets:

a.       Life expectancy at birth OECD average = 80.1  US = 78.7 (best is Switzerland = 82.8)

b.      Life expectancy 65+ OECD average = 20.9 yrs US – 20.4 (best is France = 23.8 yrs)

c.       Mortality Ischemic Heart Disease OECD average = 122/100,000 pop. US = 122 (best is Japan 39/100,000)

There is a lot more evidence out there Paul that proves that your adored free-market model is broken, but you have to stop covering your eyes and look up.  The healthcare systems that are producing results for their citizens are blended private public models.  If I were an American I would be asking why my outrageous healthcare costs are not giving better results and why a doctor, who is a contributing writer to Forbes, is not shouting from the rooftops about that!    

What’s up with that Paul?  Don’t your patients deserve to live longer healthier lives? 

Perhaps you are focused on: Your money – and Your life – at stake.  

Health.  Information.  Managed Well

Carpe Diem – Seize your data for better health

We are living longer in North America.  If you can avoid getting in a car accident or dying from some violent encounter like being shot, you have a better chance of living longer in the US and Canada than any other industrialized country.  This is good news, IF we can live longer in good health but how do we manage that?    

23 and Me founder Anne Wojcicki offers up a compelling case to achieve ‘Healthy at 100’ (23 and Me’s Mission).  In the recent issue of Fast Company she promotes the personal and humanitarian benefits of participating in genome testing.  For $99, 23 and Me offers a fascinating opportunity for individuals who want to understand the impact that their DNA has on their risk for certain illnesses and, as I wrote last December in  The Risks and Benefits of Making Genome Data Open and Free, the genome holds great promise for individuals who want to manage their health. 

The challenge for individuals adventuring down this road is understanding what an increased risk means in the context of many other factors that impact health.  Our health outcomes, including how long we will live are determined as much by our genetic inheritance as our behaviours and many factors outside of our control. There is no certainty in DNA testing, only a quantified level of risk. 

Will DNA testing tell me more than what I already know from the health history contained in my family tree?    My father, a type one diabetic, died in his early sixties.  He lived his life with an understanding of the toll diabetes would have on his everyday life and his life expectancy.  He watched his younger sister succumb to the impacts of her poorly managed diabetes and he lived his life with tightly controlled behaviours that allowed him to travel internationally, run a successful business and live to see six grandchildren come into the world.  He often declared ‘I’m the healthiest man in this house’.  And he was.

My mother, on the other hand, is the antithesis of the Public Health poster child.  She is fond of processed foods, wine and coffee.  She started smoking long before I was born and doesn’t exercise.  She will turn eighty in a few months and other than some calcium supplements and cholesterol medication, she is illness free, active in many social circles, cognitively sharp and very happy. 

In me is a random combination of mom and dad’s genetic legacy combined with behaviours that emerged from growing up with their influences. There was no obvious health history that would have alerted my doctor or me to a melanoma diagnosis that took me by surprise twelve years ago.  But could there have been a warning in my DNA?

According to 23 and Me, one in 71 Americans develops melanoma over a lifetime. Genetics are thought to account for some of the variation in risk of skin cancer, though estimates vary widely.  While there is cancer in my family tree, there isn’t in my immediate family, I was the first and so far the only one who has had a melanoma diagnosis.  If DNA testing had been available 15 years ago, it may have alerted me to an increased risk of melanoma and motivated me to engage in preventative screening. 

What gems of genetic risk assessment are waiting for me and am I ready to hear about them?  I say 'Carpe Dieum', seize the day, the future is unforeseen and one should do all one can today to make one's future better.  One day that may include DNA testing by 23 and Me but not today. 

Your health.  Your information.  Manage it well.  

No Goat's Gonna Save Your Ass

In a recent blog Bridging the Chasm to Healthy Behaviours I wondered about why the evangelists of digital technologies keep proclaiming to be the panacea for healthcare reform.  ‘Apple postulates in their recent campaign, “Will it make life better?”  I respond, “No!”  Making life better is the sole responsibility of the individual.  Technology can play a supportive role in the hands of a motivated individual, as a coach, teacher and guide but technology can’t put the healthy food choices into your grocery cart or take your evening walk - only you can do that.’

So it was encouraging to see Tim O’Reilly (@timoreilly) tweet that this article In 20 Years We’re All Going to Realize This Apple Ad is Nuts  by Mark Wilson, “may well be the most important thing you will read all year”.  I couldn't agree more.  Technology can play a role in health improvement but it can also be a barrier, a distraction from the factors motivating healthy decisions such as fully engaging with your social network, directing discretionary spending to healthy options and even taking the time for a walk in the woods. 

A friend gave me a button recently ‘No goat’s gonna save my ass’ since she knew I wrote under the Fainting Goat pseudonym.  When I searched for the origin of the button I found it was part of a drink responsibly campaign for the Nova Scotia Department of Health.  The Magic Goat video could just as easily depict consumer’s unrealistic expectations that technology will be responsible for improving their health.  There are no short cuts to healthy living and reducing your risks for chronic disease.  But there are lots of distractions and companies willing to sell you a ‘quick fix’.  Messages bombard you from everywhere.  Your best defense is your own rational thinking but you have to take time to distance yourself from the noise and apply it. 

There was a constructive article posted this week How to be a Proactive Patient and, while I prefer the term consumer (we are not all patients but we all consume healthcare services), the advice holds strong for anyone looking for guidance on how to be a more active partner with your healthcare provider.  My top 3 pieces of advice; don’t be afraid to question your doctor; keep your own medical record; and talk to other patients who share your diagnosis.   The article ends with ‘Remember, your body is your business’ - words to hold onto.

This is not rocket science.  Exercise daily, eat fresh (and local) whenever possible and avoid the junk (we all know what it is).  Take time for family, friends and social supports, if you smoke cut down or quit and if you drink do so in moderation.  Understand the connection between your family’s health and your own (be it genetic or learned) and if you have children, acknowledge the role you have in informing their health behaviours.   Don’t blame others for your choices.  Laugh often and watch out for signs of stress.  

A family member, partner or good friend is going to help you reach your goals much more effectively than a piece of technology.  Share your goals and help those you care for reach theirs. 

Now, this Goat is going to abandon the computer and go for a hike.

  

It’s your health.  It’s your health information.  Manage it well.

Embrace your inner Captain Kirk

I recently noticed that there are no overweight or obese people on Star Trek. Why?  They sit most of the day in front of computer panels, have relatively no commute on the ship that is their home/office/recreation space for years on end and they get beamed from their space ship to planets or other ships through a process that requires little or no exertion.  On the other hand they have no access to fast food, no one smokes and no one appears to drink.  Perhaps the Enterprise provides an ideal, evidence-informed environment that contributes to optimal health, free from negative consumption habits.  

If Gene Roddenberry can envision it, we can certainly duplicate it, right?  There are already segments of our population who resemble the crew of the Enterprise; astronauts and military personnel.  We prepare these individuals for the demanding work they do through intense physical training, a controlled environment and instilling an acute awareness of the potential and limits of their body’s abilities. 

But before we get too excited about creating future Captains like James T. Kirk, let take a closer look at how we are building our future space travel.  General Foods (Tang) and Pillsbury (Space Food Snacks) have already contributed to space food development and now a number of companies such as Virgin Galactic  have privatized space travel.  Keeping on this path, our Enterprise will likely be sponsored by Coke and McDonalds and our captain will more likely resemble Rob Ford or Chris Christie as our poor eating habits follow us into space.  How can we expect a future that isn’t commercialized when we are so attached to our unhealthy commercialized habits here on earth?  

We are not all going to be astronauts but we can learn from them. 

As Astronaut Chris Hadfield so eloquently said “Don’t let life randomly kick you into the adult you don’t want to become”.  Focus on those things that you can control.  Accept those things you cannot control.  Set goals.  Identify the person you want to be and don’t lose sight of it.  Control your environment don’t let it control you.  Be intentional. Be aware.

It is exciting that we will soon have access to Star Trek gadgets like the Tricorder in the next few years (if you haven’t heard about the Tricorder X Prize and the $10 million contest, you will soon as the developers rush to bring versions of this device to market).  But it is only a device that will measure how healthy your body is, you have the ultimate control over the choices that will make you healthy.  This is the difference between Captain Kirk and Captain Crunch.   This is about lives well lived.  This is about legacy and mentorship, role models and real life inspiration. 

It’s your health.  It’s your health information.  Manage it well.  

Bridging the Chasm to Healthy Behaviours

Digital Health Solutions are making news.  Some tout advances in health technology as saviour to our healthcare systems, others claim technology will improve individual health outcomes.  But are these technologies solutions or simply shiny new tools?  Can any piece of technology be responsible for improvements when true success relies on an individual’s motivation and efforts to change behaviours? 

Apple postulates in their recent campaign, “Will it make life better?”  I respond, “No!”  Making life better is the sole responsibility of the individual.  Technology can play a supportive role in the hands of a motivated individual, as a coach, teacher and guide but technology can’t put the healthy food choices into your grocery cart or take your evening walk - only you can do that. 

The challenge to achieving improved health outcomes lies in the chasm between an individual’s awareness of healthy behaviours and their personal decision to change their behaviour.  It requires building a bridge of healthy attitude and it takes hard work and determination.  In order to change behaviour individuals must first understand there is a problem, and then change their attitude towards the problem and then they can work towards behaviour change.  It would be difficult to find an adult who doesn’t know that smoking cigarettes is bad for your health and probably kill you, but 20% of Americans continue to smoke.  Understanding that something is bad for you doesn’t mean you will stop doing it. 

Behaviour change is complex.  Improved health outcomes will come with understanding what motivates people to change. Solutions will come when we understand the various roles of healthcare providers, technology and support networks for individuals working towards a goal.    

Right now we have the digital cart before the horse.  While digital technologies can support individuals who have decided to work towards a specific goal, the device in and of itself does not motivate (can actually be a barrier) and cannot create behaviour change.  Those who use digital devices to set and achieve goals are already motivated and living with a healthy attitude.  Digital Health is preaching to the converted. 

The focus should be on the majority of population who are living with unhealthy behaviours.  Two thirds of Americans are overweight or obese;  20% of Americans smoke;  At least 1 in 4 Americans eat some type of fast food every day;  Americans consume 31 percent more packaged food than fresh food; and 36% of Americans don’t get the minimum amount of daily exercise.  (Note; while American statistics are used, North American statistics are comparable).  The majority of Americans don’t need a digital device; they need motivation to change they need a bridge to healthy behaviours.  

If we are serious about improving health outcomes, we need to stop being distracted by the shiny devices and their marketing claims and focus on understanding what motivates sustained behaviour change. 

It's your health.  It's your health information.  Manage it well.   

Can a PHR help you to beat the recent Cancer statistics?

This week the Canadian Cancer Society (CCS) released Canadian Cancer Statistics 2013.  Here is the big picture, “Almost half of all Canadians (41% of females and 46% of males) will develop cancer in their lifetime and a quarter of all Canadians are expected to die of the disease.” 

How do we defend ourselves against these statistics?  Can access to our personal health information help us to live longer?  If epatient Dave is an example the answer is YES! 

“e-Patient Dave” deBronkart was diagnosed in January 2007 with Stage IV, Grade 4 renal cell carcinoma (kidney cancer) at a very late stage. His median survival time at diagnosis was just 24 weeks; with tumors in both lungs, several bones, and muscle tissue, his prognosis was “grim,” as one web site described it.  His doctors had advised him to get his affairs in order.  

Dave had another idea.

He asked for his records and researched treatments and options online, and he consulted with cancer survivors.   He received great treatment at Boston’s Beth Israel Deaconess Medical Center: his surgeon removed the extensive mess (laparoscopically!), and the Biologic Therapy program helped him participate in a clinical trial for the powerful but severe High Dosage Interleukin-2 (HDIL-2). His last treatment was July 23, 2007, and by September it was clear he’d beaten the disease. That was six years ago.

Dave is now a renowned speaker for the #epatient movement, you can watch his inspirational TED Talk and follow him on Twitter for emerging dialogues related to “patients rising’.  Like so many rights activists before him, it must have taken great courage to be that lone voice in the wilderness, working against the healthcare system to get control of his data to try to save his life.  But as a rights based campaign, the fight to control and manage our personal health information is not getting traction among the masses. We are failing to build an ‘occupy’ movement.  

Consider this, if Dave is not an anomaly (and I don’t believe he is), what impact could  empowered patients have on the Canadian Cancer Society statistics released this week?  If only 1% of patients were able to achieve the results that Dave did (six more years of life), that would be 755 lives saved this year alone (CCS estimates 75,500 Canadians will die from cancer this year).  That is more than the number of homicides in a given year (2011 there were 598 homicides in Canada).  For our neighbours to the south, who share similar statistics (but with 10 times the population), my rudimentary math skills estimate the impact on your population to be 7,550 lives saved (and you have mandated PHRs about to come into force next year). 

Why are we as healthcare consumers, not demanding to be more engaged in our healthcare decisions?  Why aren’t we mad as hell about the lack of access we have to our healthcare data; data that legally belongs to us. 

When Dave deBronkart exclaimed “give me my damn data”, he was attempting to correct an injustice, his inability to access his health information in order to become a partner in his care.  Legally, the information belonged to him, what he was able to do with that is a lesson for all of us.  Think of what might have happened if Dave had grown up with access to his health information.  Perhaps his health history may have motivated Dave to advocate for a diagnostic test or to research his genetic predisposition. 

Our right to manage our personal health information is not just about improving our ability to respond to a serious diagnosis, the benefits will include improving our ability to prevent chronic illness in the first place.  If we could showcase the potential years of life we add when we embrace healthy lifestyle decisions, maybe then we would start to see some interest.

John Nosta wrote a great piece in Forbes last week that everyone working in this area should print, keep handy and use in ongoing discussions.  He boils down the constantly expanding concept of ‘digital health’ to one clean understandable metaphor; digital health is a check engine light for your body.  This is what the epatient movement needs, a clear message to take to the masses.  A message that can be attached to the compelling stories like Dave’s.  A message that will inspire people to declare “Gimme my damn data!”  

It’s your health.  It’s your health information.  Manage it well.