The Challenge with Compliance

With 50% of consumers not taking medication as prescribed, medication compliance is a big problem

Pharmaceutical companies, pharmacies and healthcare systems are looking for solutions to improve compliance to therapies.  Meanwhile, healthcare consumers are looking to better understand their conditions, track aspects of their health and become informed partners in their care.   

With healthcare consumers connecting with their pharmacist more often than their family doctor, doesn't it makes sense to build solutions between pharmacists and patients to improve medication compliance?

Pharmaceutical companies are seeking solutions by partnering with the start-up world and providing investments for digital health solutions.   Most recently Leo Pharmaceuticals announced a $65M project for digital health innovations, joining the ranks of Pfizer, Bayer and J&J (and others) who are reaching out to the start-up community. 

Community pharmacy has also invested in innovative partnerships.  Pharmacy giants such as CVS and Walgreen’s are leading the way in providing digital solutions to help their prescription customers manage their medications.   In a recent interview CVS Chief Digital Officer, Brian Tilzer articulated the company’s vision to create a “connected” health experience that makes it radically easier for people to save time and money.  CVS is looking to play a major part in helping its pharmacy patients better manage their chronic conditions, by arming them with everything they need to manage their medications.

But compliance is not just a patient problem.

In the rush to create solutions, it's important for digital health companies to be mindful of regulatory compliance.  The resource intensity and time spent on ensuring compliance should be seen as both an investment and a critical success factor to finding sustainable digital health solutions.

The opportunities for improving health are exciting but, as Fast Company’s Christina Farr recently wrote, “the "move fast, break things" mentality that is fundamental to the success of consumer-tech companies doesn't fly in health care”.  

Digital Health: Patients at the Centre, Patience to Market

No one can say that we were not told.  In fact, the prediction was announced in the New York Times over a year ago.  Larry Page predicted that if we data mined health data we would probably save 100,000 lives in a year.  It appears that mental health patients will be first in line to test the theory of using data mining to save lives. 

Last week Google announced that it hired Tom Insel, long seated Director of the National Institute of Mental Health.   When asked about what his role will be with Google, Mr. Insel confessed he does not know but is excited for the opportunity to work with Google.   “Mental health is something they’ve (Google) decided will be their next area of focus in the life sciences – they’ve already done exciting work in cancer, heart disease and diabetes. As I said before, I think this technology will have an enormous impact on people with mental illness.”

Forbes Magazine  recently announced that the first digital pill, Proteus, will begin FDA review. “Proteus Digital Health reported on September 9 that the FDA will be reviewing its unique “chip within a pill” device for the depression and schizophrenia medication, Abilify, to hopefully gain approval as the world’s first digital medication.”  Renowned Bioethics scholar Arthur Caplan describes the ethical challenges this week in an editorial Would You Take a Digital Pill?  “Once you swallow the pill, a message can be sent back to whoever is registered to get it — doctor, pharmacist, nurse, probation officer or all of the above. If you aren't taking your psychiatric medicine pill the way you are supposed to, it's possible a whole lot of people will know.” 

While these announcements are distinct it isn’t difficult to see the overlap.  Google turns its incredible data mining power towards mental health, hiring one of the leading Mental Health authorities to, well we don’t know what he is going to do yet but I bet it will be high profile.  In the same week a widely prescribed medication for mental health patients with a digital sensor goes to the FDA for review. 

Saving 100,000 lives is an honourable goal and I applaud the efforts.  But there’s no doubt that it may come at a loss of privacy and patients need to be at the centre of the discussion as we move forward.  We have come a long way from the injustices imposed on individuals like Henrietta Lacks and vulnerable populations of orphans, slaves and homeless persons all in the name of health research.   Health QR is dedicated to never losing sight of their sacrifices as we work to empower health care consumers with access to their personal health information.  Let’s all enter the realm of digital healthcare cautiously.  

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.  

The Pushmepullyou of Patient-Centredness

Healthcare systems are changing rapidly.  Much of the change is being driven by consumers demanding a larger role in their care.  Some of the change is being hoisted upon consumers as a way to gain efficiencies in a bloated model of care that is resistant to change.  From the Pushmepullyou efforts of healthcare reform, will we emerge with better care and a model of shared responsibility between consumers and healthcare professionals? 

Many change makers out there (and there are a lot) are blazing new trails, taking on large bureaucracies and systems that are resistant to change, pulling all of us towards a more participatory healthcare system. 

In his recent TED Talk, Lucien Engelen promotes a fresh new approach to health research. Research in Healthcare is Without Patients, explores the concept of crowd-sourcing (co-creation) advice and financing for research so patients are more engaged in the process.  As an advocate for personally controlled health information, I applaud the concept of crowd-sourcing research.  Bringing the research community together with patients to solve issues makes perfect sense and the video made me wonder where the patients are in my country’s research processes. 

In Canada the federal government is promoting the Strategy for Patient Oriented Research (SPOR) funded through the Canadian Institute for Health Research (CIHR).  According to CIHR, the goal of SPOR (emphasis is mine) “is to better ensure the translation of innovative diagnostic and therapeutic approaches to the point-of-care, as well as to help the provinces and territories meet the challenge of delivering high quality, cost-effective health care. It involves ensuring that the right patient receives the right clinical intervention at the right time, ultimately leading to better health outcomes”. The $240 million in grants recently approved through SPOR consider health systems, healthcare professionals and governments but the patient is relegated to the receiving end of services, not as a contributor to the solutions.  Shouldn’t patient engagement be a fundamental component of “patient-centredness”?

On the other end of the patient-centred spectrum we have Salvatore Iaconesi (find him on Twitter @xdxd_vs_xdxd ) who crowd sourced his cancer treatment and blogs about it at La Cura.   Salvatore lives in Rome and at the age of 39 is battling brain cancer. Unable to access his MRI’s, he cracked the codes to his clinical records and, on September 10^th  posted them online inviting the world to respond to his diagnosis in whatever way they want.  Salvatore also spoke at TEDx in Rome The Cure where he explained how he took the hundreds of thousands of responses to build his personal strategy to combat his brain cancer. 

With the expanding utilization of digital devices and access to personal health records it won’t be long before healthcare consumers are demanding to partner with healthcare professionals in their care taking on roles from advisers to self-managers of treatment plans.  Lucien, Salvatore and many others are contributing to this exciting new future for healthcare, they are the pioneers who will be recognized and celebrated for years to come.

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

PHR's: the Apple Newton of our Times

Personal Health Records (PHRs) have been around long enough now that utilization studies are starting to emerge and the data isn’t good.  While we have increased physician adoption of EMRs and PHRs by offering incentives (soon to be disincentives) healthcare consumers are not participating.  A recent study conducted in the US highlighted that only one in 10 American’s had a personal health record and only about 50 percent of those questioned even knew what a PHR was. 

If the current offering of PHRs were a commercial product aimed at consumers (rather than healthcare professionals) they would have been pulled off the shelf ages ago.  Think Apple Newton (circa 1993). The problem with the Newton wasn’t any physical or technical problem. The problem that broke the Newton was that nobody was prepared for it.  There was no mental slot in people’s heads that the Newton could glide into.  Consumers are willing to overlook technical glitches if they have a firm grasp of what a product is and what it’s supposed to do. 

Why aren’t consumers taking advantage of all this development in the PHR world?  Healthcare Global looked into why patients are reluctant to embrace PHRs. 

Technological issues include

• Concerns about personal health record privacy
• The availability of personal health information in an emergency situation
• The notion that the health care industry's adoption of information technology lags far behind industries such as insurance and banking

Philosophical issues include

• The process of gathering personal health records is a complicated and cumbersome one that could take years
• Healthy patients who infrequently visit a doctor have little ePHI to begin with and, so the argument goes, have no interest in managing ePHI
• Physicians are not promoting them

 All of these issues make sense and Healthcare Global concluded from this information that that “the real spur in adoption will have to come from physician engagement and encouragement”.

Does this make sense to anyone?  With all the incentives and physician engagement, the solution to the issues identified by consumers is to engage with physicians more?  From what I can glean from the above issues, the focus needs to be on patient engagement, not physician. 

 Let’s try incenting consumer uptake by giving people a simple format to handle their personal health information that provides value and is actually fun and rewarding.   One approach is through gamification.  Carwyn Jones and Faisal Ahmed recently published an article in Pharmaphorum on gamification and defined it this way, "Gamification is an approach to learning, not a technological initiative in itself. True, gamification is a way of using technology to be more engaging; but it does this by giving the user certain actions to complete in return for rewards." 

Andrew Cantella a student at the University of Denver wrote a forward looking piece Playing for Your Life posted on the NaviNet Website last year. In his article he theorizes that gamification used to increase patient engagement should improve outcomes.    “If a progress bar, point system, or even simple animations were added to one’s treatment plan, an increase in engagement–subliminal or conscious–should result.”  This is the same logic being applied to the quantified-self movement flooding the market with physical activities trackers (and other monitoring devices). 

There are lots of interesting approaches out there to engage consumers.  Let’s stop focusing on the healthcare professionals and start engaging consumers, because without consumer participation, personal health records won’t accomplish anything. 

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

Public Safety in the digital age - Responding to Terrorists and Viruses

Does it matter if a terrorist is ‘homegrown’ or ‘foreign born’?  When the threat is in our community the risk they pose is the same, and the impact they have on society is equally real.  We rely on officials to recognize and monitor these threats and create strategies to reduce or eliminate the risks to us.  When it comes to public safety, a terrorist threat and the spread of a  potentially fatal virus are both concerns that require constant monitoring and preparation to ensure a quick response when required. 

   

As public health officials watch the H7N9 virus developing in China the emerging threat to our own country is being monitored and measured.  Our public health officials are preparing strategies, opening up the lessons learned from H1N1 and SARS and working to alleviate some of the negative impacts if this virus lands in our country.  But like the Boston Marathon terrorist attack, they cannot plan for everything; we can only hope that the public health response is as immediate and well-orchestrated as that shown in Boston this week. 

Are we ready if H7N9 arrives?  There are a few things that our public health officials could take from this week’s events in Boston. 

Mobile Technology.  Individuals capture an incredible amount of data and images on their mobile devices; we are constantly recording our lives.  Following bombing at the Boston Marathon, a ’flood of digital evidence’ was received by the FBI that contributed to the identification of suspects and photographs that could be circulated.  When it comes to the tracking of viruses through social media, the effectiveness has already been measured.  Trending Now: Using Social Media to Predict and Track Disease Outbreaks identifies some of the opportunities and challenges for using social media for surveillance of infectious diseases.  As the FBI openly appealed for support through social media to help track suspects, so too could Public Health officials appeal to the public to self-track through established tools like Google Flu Trends.  While the information may not prevent an infection, it can be used to improve response times and contain the spread of a disease when an event occurs. 

Reliable Sources on Social Media.  In an emergency situation citizens are hungry for information.  Events in another country that we blithely scanned in the news a week ago become acutely personal when it is happening in real time in our backyard. Social media is where individuals will go and reliable sources need to be on top of the rhetoric and misinformation being circulated.  During the lock down and search for the 2^nd suspect the hashtag #manhunt was broadly used and the url for the Boston Police radio scanners was circulated so people could hear first-hand from police what was happening.  The first report on twitter that the suspect was apprehended came from the Boston Police.  This is the new age of information access, if officials don’t provide it, individuals will hack into it and share it.  Public Health should be preparing for this and plan to provide accurate information via social media frequently in real time 

Voice of Authority.  Law enforcement does this exceptionally well.  “Stay in your homes, close your business and shut down all public services”.  As I watched the barren streets of Boston on the news last night and how citizens voluntarily evacuated, I was reminded of the power of our Public Safety (Canada) legislation.  In Boston we saw the full force of a voluntary order for people to stay in their homes and close their businesses and cancellation of public transportation and schools.  That same authority can be used in the case of a dangerous communicable disease outbreak but as we saw with SARS in Toronto, it was met with tremendous challenges. Will people comply so readily to a threat they cannot see?  The unanimous compliance by 1,000,000 Boston residents to voluntarily confine themselves to protect against the 19 year old suspected terrorist provides an interesting comparison to confinement challenges during the SARS outbreak in Toronto in 2003.  In her article Rights and Quarantine During the SARS Global Health Crisis: Differentiated Legal Consciousness in Hong Kong, Shanghai, and Toronto, Dr. Lesley Jacobs examines how we reconcile the individual’s claim to autonomy and liberty with the community’s concern with safety…How are individual rights and the public good pursued simultaneously?.

Appropriate Compensation – Following the arrest of the 2^nd suspect in the Boston Marathon attack, it didn't take long for the discussion to turn to compensation for the enormous costs of a lockdown that only lasted 15 hours.   If we believe that quarantine or confinement is necessary to protect the public from increased risk then we need to compensate them for loss of income.  In the same way we compensate people for government imposed jury duty we need to recognize that quarantine or confinement results in loss of civil rights.  If staying home means others will not get sick there is an anticipated benefit to the healthcare system on the backs of cost to individuals and businesses.  The time for that decision is before an event occurs, not after. 

The events in Boston shine a spotlight on a significant factor in dealing with public safety concerns, the public’s acknowledgement of the severity of the threat. How do we educate and raise awareness without unduly frightening citizens.  How do we galvanize public attention and an appropriate prevention and protection response that is proportionate to the identified risk? 

When a public safety event happens the public relies on officials to guide decision making and advise the public on appropriate measures to stay safe.  In 2013 we are living in a more connected digital world than we were 10 years ago when SARS arrived killing 44 people in Canada, and we rely on social media much more than we did in 2009 when H1N1 was emerging.  Are public health officials going to work with or plan against social media as we strategize for a potential spread of H7N9?

Look to Boston, to the quick response and engagement with social media that supported officials.  Work with individuals to track and respond to the spread of disease, empower the highest officials and organizations with social media tools for reliable communications, use social media and official voices to clearly articulate risks and let citizens know that if officials must impose restrictions on them, they will be compensated. 

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