The smartphone will see you now

I have a very simple goal.  I want to live a long, healthy life.  In order to accomplish this, my body needs to be functioning at its highest capacity.  But, my body is made up of multiple complex systems that I don’t fully understand and I require a trained healthcare professional to monitor it in order to ensure it is functioning properly…or do I?   Now, I can take on that role with the help of my smartphone. 

The role of family physicians in providing preventive care has been declining.  (See  What if doctors worked like dentists?)  This means healthcare consumers are left to be more proactive in managing and monitoring their health.  The good news is there a whole lot of options out there to help us. 

Smartphones – There’s an app for that!  Your phone has the potential to monitor all kinds of health conditions.  According to Dr. Eric Topel, noted digital health guru and author of The Creative Destruction of Medicine (my current read) “You can take the phone and make it a lab on a chip. You can do blood tests, saliva tests, urine tests – all kinds of things – sweat tests, through your phone. This is a powerful device,”

Pharmacists –This healthcare professional is looking to provide you with services to help manage your health.  Kroger’s Health Centre kiosks, for example provide customers with an easy and secure solution to consistently measure, monitor and improve body composition and other clinical conditions. Assessments include blood pressure, weight, body composition, BMI, color vision and the ability to upload blood glucose numbers and other biometric results.  And it’s free!

Paper and pencil - The  PEW Tracking for Health Report released this week identified that 69% of U.S. adults track a health indicator like weight, diet, exercise routine, or symptom.  Of those half track “in their heads, one-third keep notes on paper, and one in five use technology to keep tabs on their health status.  Technology is not the enabling factor, almost 50% of those studied didn't use technology at all. 

Are we ready to take on this role?  U.S. consumers’ desire to take an active role in their health decisions is growing, according to the Altarum Institute Survey of Consumer Health Care Opinions.  61% of people want to make health decisions either on their own (26%) or with input from their doctor (38%). The proportion of people wanting to be “completely in charge of my decisions” rose 4 percentage points in one year, from 2011.

Some people are actively participating in the digital health uprising, they are the early adopters, leading the way, motivating a consciousness rising.  We need to realize that the internet and self-tracking devices are just tools. The real change will come when we each recognize the value of taking responsibility for monitoring our own health.  We as consumers are the only ones who can make this happen.  For me, there is no greater value than living a long healthy life. 

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

What if doctors worked like dentists? (Note to dentists, I realize that you are doctors too)

This week there was a hilarious video If Air Travel Worked Like Healthcare that parodied the inefficiencies and frustrations many of us experience with the healthcare system.   The video reminded me of a recent visit to my dentist, he was commenting on having to wait at our local emergency room for hours with his son who had potentially broken his arm.  He commented “if I ran my office like they run that emergency room, I’d be out of business in a month”.   

It made me wonder, what would it be like if my family doctor worked like my dentist.

Every six months my dentist calls me to book a preventative care appointment for cleaning and check-up.  My dentist offers evening and weekend appointments that make routine cleanings easy and convenient to book.  Every few years my dentist ensures I have x-rays updated; his office keeps track of that screening schedule and calls me to book the appointment.  During my appointment I spend most of my time with the hygienist who does all the cleaning and routine exam before calling in the dentist for a 5 minute consultation and chat.   If I require urgent care from my dentist his office will makes sure I am seen right away (usually the same day).  The continuity of my dental care is maintained by my dentist.

My family doctor (like most GPs) doesn’t believe in annual well visits so there are no preventative care appointments.    It is my responsibility to track my own periodic screening schedule (such as pap tests) based on government approved clinical guidelines and schedules that seem to change quite frequently. When I remember to call for my screening appointment it will take six months to book a ‘non-urgent’ appointment and I will have to mark it in all my calendars because no one from my doctor’s office will call to remind me.  My work/family schedule will have to accommodate the appointment when it comes due because rescheduling will mean 6 more months of waiting.  When I visit my doctor, she takes care of 100% of the visit.  If I require urgent care I usually find myself in a walk-in clinic or emergency room.  The continuity of my medical care is scattered among many providers.

In my ideal, imaginary healthcare system my doctor would run her office like my dentist.  All my preventative appointments would be monitored by her office, they would call me when I was due and it wouldn’t be my doctor who took care of these appointments, but an RN or even LPN.  My doctor’s office would also track and schedule my screening appointments and book me in within a reasonable timeframe that would include evening and weekend appointments.  Again, my doctor doesn’t need to perform these routine screenings, a nurse or nurse practitioner can with my doctor providing a brief consultation following the screening.  If I require urgent care that is not acute, I would be able to visit my family doctor within a day or two and the continuity of my medical care would be maintained in one office.

Last week I wrote about Prognostications and Health Policy citing the OMAs decision to not provide annual physicals.  This week the Washington Post ran an article Don't Open Wide, Annual Check-Ups Are Pretty Much Useless.  We could find all kinds of holes in both the OMAs decision and the research cited by the Post, but it is infinitely more enlightening to look the Mayo Clinic’s recently published a study Why Patients Visit Their Doctors: Assessing the Most Prevalent Conditions in a Defined American Population  

Here are the top 10 reasons people visit their family doctor

1. Skin disorders
2. Osteoarthritis/joint disorders
3. Back problems
4. Cholesterol problems
5. Upper respiratory conditions (not including asthma)
6. Anxiety, depression and bipolar disorder
7. Chronic neurologic disorders (such as Parkinson’s and Alzheimer’s diseases)
8. High blood pressure
9. Headaches/migraine
10. Diabetes

It seems strange to me that while family doctors don’t see a need for preventative care, they do spend the majority of their time responding to patients dealing with chronic conditions that could be prevented. 

I believe it's time to have a chat about the future of preventative care.  Who is responsible for monitoring it, what is the best way to manage it, how do we position government policies to incent it, how can healthcare consumers and practitioners work together and where does new technology fit in to keep everyone living to their optimal health.

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

Prognositcations and Health Policy

This week a number of interesting articles and announcements occurred.  The annual Consumer Electronics Show in Las Vegas provided lots of fodder for the quantified self-movement and prognosticators from around the world were exclaiming health innovation predictions for 2013.  Much of the exciting news centred on mobile health solutions, quantified-self tools and the emerging role of the consumer in the future of healthcare.

Mixed into all of this the Government of Ontario (Canada) and the Ontario Medical Association (OMA) announced that healthy people don't need physicals.   The agreement to eliminate the service will save millions of dollars in what the OMA claims are unnecessary tests and procedures as part of the annual physical or Periodic Health Examination (PHE).  In Canada, physicians and governments control the healthcare system and when they create a void by taking a service away such as annual physicals, one would think there would be an obligation to educate healthcare consumers on how to fill that void. 

Wow, I thought, what an incredible opportunity for the medical community to promote digital solutions for self-monitoring health status as a replacement for the annual physical.  What a great policy window for a government to offer tax rebates to consumers who purchase digital monitoring devices to self-manage their health.  But that didn’t happen.  Medical associations, while denying any value in annual physicals, continue to deny the effectiveness of digital self-monitoring. 

So, if the OMA claims that annual physicals are unnecessary, what is the role of physicians in preventative health care?  Who will benchmark an individual’s health status and who will assess and monitor an individual’s risk for chronic illness given that many factors are behavioural but many are also inherited? 

We know that chronic illnesses (diabetes, hypertension, arthritis, asthma, COPD and types of cancer) are creating a tremendous burden on healthcare systems around the world.  We know that managing chronic illnesses costs $190 Billion annually  in Canada and in the US, total direct and indirect costs from chronic disease were estimated to be $1.1 Trillion in 2003 (last time data was available).  We know that chronic illnesses are largely preventable. We know that certain behaviours increase our risk for chronic illness (smoking, being overweight, poor eating habits).

Preventing chronic illness and managing risk factors should be a collective priority for healthcare consumers, the medical community and governments. 

That said,  I don't oppose this shift away from physician-centric annual physicals but I want my primary care provider to acknowledge the role of self-monitoring and I want her to work with me to build our collective capacity in interpreting data from self-monitoring devices.  We need physicians and governments to agree on standards for self-monitoring devices that work from existing clinical practice guidelines and approved risk assessment tools.   We need them to partner with us.

Programming devices to alert individuals when their health is at risk is here now and it’s easy; however, having the medical community endorse the use of digital devices is a battle we will see played out for years to come.  The Fainting Goat optimistically predicts that annual physicals will be replaced by digital monitoring by 2015!!!  Well, maybe 2017 ... anyone for 2020? 

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

Connecting the Dots: Reflections on 2012

In 2012 a man with prosthetics ran in the Olympics, we landed a vehicle on Mars and someone jumped from the edge of space.  It was a year of truly amazing scientific advances.  

Steve Jobs once said, “You can’t connect the dots looking forward; you can only connect them looking backwards. So you have to trust that the dots will somehow connect in your future.”  As I look back on some of the ‘dots’ I can see a pattern of evolution and discovery surrounding personal controlled health information percolating among health technology innovators.   I see momentum growing and I believe we are on the verge of meaningful access to our personal health information.  This movement will empower us to measurably improve our health and provide evidence of the benefits of collaboration between healthcare systems and healthcare consumers.

Here are my top 7 DOTS from 2012. 

1. Dave deBronkart (US) @ePatientDave is the original epatient passionately promoting the most underutilized resource in healthcare, the patient and he should know, he beat the odds and is alive today to tell his story.  Dave deBronkart: Meet e-Patient Dave Dave did it, you can do it too, just say Gimme my Dam Data.
2. Salvatore Iaconesi (Italy) @xdxd_vs_xdxd  - 39 year old Salvatore Iaconesi lives with with terminal brain cancer (an “unwanted passenger” in his body) and wants to transform the meaning of the word "cure” and the role of knowledge. He cracked the codes to his clinical records on September 10^th and posted them online inviting the world to respond to his CT scans, MRIs, lab notes and glioma 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. 
3. Richard Van As and Ivan Owen (South Africa & US)  – a year ago Richard lost 4 fingers from his right hand, around the same time, Ivan created a mechanical hand that could be worn and operated by a person’s actual hand.  Richard lives in South Africa and was searching the internet for a solution to his health issue and Ivan lives in the US and posted a video of his mechanical hand on YouTube.  The internet brought them together and for almost a year, the two have been engaged in an online collaboration to equip Richard with a prosthetic hand.  You can read about their story here Coming up Shorthanded.  
4. John Wilbanks (US)@23andme - John is a genome adventurer, his work on Pooling our Medical Data includes accessing his genome through 23 and Me and publishing it online to learn even more through international genome researchers and analysts.
5. Brian Goldman, MD (Canada) @cbcwhitecoat – ER doctor and host of CBC Radios White Coat Black Art.  His weekly show provides an important perspective of the healthcare system in Canada.
6. Berci Meski, MD (Hungary) @Berci – Medical doctor with PhD in genomics, his tweets are always informative and forward thinking with an eye on how technology can advance medicine.
7. Andrew Spong (UK) @andrewspong – with a focus on health communications Andrew circulates a wealth of information on patient-centred care.

There are many more inspirational people out there working to improve access to personal health information.  The movement is growing in strength, what will 2013 bring? 

All the best for a happy, healthy year. 

Fainting Goat

Personal Choice is the Agent of Change

When it comes to our physical health, we are the ultimate decision makers.  What we eat, whether we take our meds or not, how much exercise we get, these are some of the choices we make.  The healthcare system repairs our bodies when they are not functioning properly, and electronic devices can provide warning lights to alert us when something may be breaking down, but we are responsible for maintenance, making sure our bodies have what they need to operate.    

Do we have the same level of control over our emotional health? Can we choose what we are exposed to; choose to experience only healthy situations?  No, but we are in control of how we react.   Last week, like so many others around the world, I was thrown off balance by the events in Newtown.  The news of the killing of 20 kindergarten students affected me like an illness, scaring my belief system and decimating my faith in humanity.  The tragic event weighed on me for days as details slowly emerged.  There is no cure for this, no therapy, or medication, no specialist to fix this illness.  Are we helpless?  Is our only option to allow time to disolve this event into a distant memory?

Just as we can be intentional in our decisions to improve our health, so too can we intentionally respond to tragedy in a way that improves and strengthens our emotional health.  26 Acts of Kindness is a movement to honour the lives lost in Newtown.  The idea is to do one act of kindness for each life lost.  The actions are trending on Twitter at #26acts and there is a Facebook page documenting acts of kindness.   You will also find debate brewing on many aspects of the campaign but I want to focus on the positive benefits found in intentional act of kindness. 

Being kind to others and helping out are behaviours we teach our children, we want them to be respectful and polite and to experience the uplifting feeling that comes from selfless acts.  As adults it becomes our responsibility to make sure we continue the behaviours throughout our lives.  

Robert Fulghum got it right and his wisdom, the insights he drew from children just like those in Newtown, was never more relevant. 

All I Really Need to Know I Learned in Kindergarten.  These are the things I learned:

• Share everything.
• Play fair.
• Don't hit people.
• Put things back where you found them.
• Clean up your own mess.
• Don't take things that aren't yours.
• Say you're sorry when you hurt somebody.
• Wash your hands before you eat.
• Flush.
• Warm cookies and cold milk are good for you.
• Live a balanced life - learn some and think some and draw and paint and sing and dance and play and work every day some.
• Take a nap every afternoon.
• When you go out in the world, watch out for traffic, hold hands and stick together.
• Be aware of wonder. Remember the little seed in the Styrofoam cup: the roots go down and the plant goes up and nobody really knows how or why, but we are all like that.
• Goldfish and hamsters and white mice and even the little seed in the Styrofoam cup - they all die. So do we.
• And then remember the Dick-and-Jane books and the first word you learned - the biggest word of all - LOOK.

The decision to participate in 26 Acts of Kindness is irrelevant.  We find these campaigns all around us in times of tragedy.  It is ultimately a small gesture, at a time of year when there is a great deal of focus on helping others.  Will it matter?  Will it do more than make us feel better? Only if it is a catalyst for lasting change.

This New Year’s millions of people will vow to eat better and lose a few pounds.  New Year’s is a trigger for those decisions but maintaining healthy behaviours takes commitment and a change in lifestyle in order to see results.  26 Acts of Kindness is no different, this movement is a trigger.  The lasting influence will only be found in the choices we make as we go forward.   

Make your choices count. 

The Risks and Benefits of Making Genome Data Open and Free

The Globe and Mail kicked off a series,  Our Time to Lead exploring the social implications of genome research in Canada.  Researcher, Dr. Stephen Scherer at Toronto’s Hospital for Sick Children is a champion of Canada’s involvement in the Personal Genome Project (PGP) and for making massive amounts of genome data open and free.

This controversial project has a plethora of risks (over three pages of identified risks, discomforts and harms in the consent form) for potential participants and one identified benefit “Participation in the project will likely provide a unique educational experience for participants”.  The risks range from the stress associated with learning that you have an increased genetic risk for a specific illness  to the risk of someone producing a synthetic copy of your DNA and planting it at a crime scene.  Add to the risks the fact that the analysis of the genome is not guaranteed accurate “The PGP cannot make any guarantees about the accuracy or completeness of any such analysis” and the fact that it will cost you minimum $4,000 (if you live in Toronto) to ensure your successful application will go forward, you have to wonder why anyone would consent to participating.

Yet I am considering it.  This blog is dedicated to advocating for control of personal health information and the genome holds great potential for individuals who want to manage their health, but it is early days for the practical utilization of genome data.  The PGP will advance the practical applications for health care consumers and I applaud that.  In an earlier blog,  My Quantifiable Self I featured John Wilbanks and his work on Pooling our Medical Data.  In his TED talk he speaks to accessing his genome through 23 and Me, a private genome mapping company in California and how he crowd sourced his genome to learn even more through international genome researchers and analysts.  His activities with his genome were very similar to what PGP is proposing.  John is a genome adventurer, I have a lower tolerance to risk.

Here is my dominant issue with participating.  To the best of my knowledge (and I am not a health care provider or scientist) most diseases and illnesses are believed to be caused by both genetic and modifiable risk factors.  Take Alzheimer’s as an example of a disease that has been linked to a specific genetic marker.  In a quick scan of Alzheimers Disease Facts and Figures 2012 published by the Alzheimer’s Association, the genetic risk factor is clearly identified but there are other factors that may contribute to the disease including cardiovascular disease and the modifiable risk factors associated with it (physical inactivity, smoking, poor eating habits). 

If I discovered through genome mapping that I had an increased risk of Alzheimer’s disease I would welcome the opportunity to have my personal health information included in a study that mapped my genetic risk for the disease against the other risk factors in my life.   I would want the legacy of my genome donation to inform future research that links an increased genetic pre-disposition to the disease, to modifiable risk factors.  Unfortunately, as it seems to be structured now, the PGP doesn't allow for that.  While the PGP does require your personal health record and completed medical history, it only includes a point in time picture of your health, not a continual record of health. 

The awareness of increased risk for Alzheimers would inspire me to make changes in my lifestyle, that activity will not be recorded in the data contributed to PGP and therefore will not be measured against my future risk for the disease.  I would want research to show that by managing my health better, I was able to mitigate my risk and beat the odds.  PGP doesn’t allow for that.

If we focus on the genetic in isolation of behavioural and environmental factors, we lose a tremendous opportunity. Why don't we create a genome portal for Canadian’s?  A portal would contain the genetic data of all participants and the managers of the portal would be the conduit between qualified international researchers and our data.  International researchers could identify potential participants and contact them via the portal.  I would much prefer to be provided with opportunities to participate in studies that have been screened by the PGP, studies that my genome and personal health information could provide valuable contributions to rather than putting my entire genome data online with my health history.

As an individual considering my participation in such a study and as an advocate for personally controlled health information, I’m not yet convinced the benefits of my participation in PGP outweigh the risks, but I will continue to watch this important project and perhaps, one day, add my genome for consideration.

Infographic -Online health consumers

Great infographic on the future of online health information!