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.  

Privilege is deeply rooted

Dr. Becker-Schutte is blogging about an interesting concept she calls Healthy Privilege and it’s inspiring some healthy dialogue.  She explains that ‘healthy people enjoy the privilege of bodies that work in the ways that they expect, free from regular pain or suffering, without extraordinary effort.  Healthy privilege allows healthy people to assume that their experience is “normal,” and to be unaware that coping strategies that work for them will not work for someone dealing with illness’.

Privilege is a tried and true concept with no quick solutions.  Peggy McIntosh’s seminal work White Privilege: Unpacking the Invisible Knapsack  is 25 years old this year.  Her analysis of White Privilege provided a framework for feminists to discuss Male Privilege.  Today, a quarter of a century later we are still debating whether Male Privilege exists, as icons like Sheryl Sandburg and Marissa Mayer make headlines for being a female in male dominated corporate boardrooms.  Privilege is deeply rooted. 

Does Healthy Privilege exist?  Heart Sisters is a blog dedicated to helping women who suffer from cardiovascular disease (it’s a great read) and its author Carolyn Thomas is one of many who have entered the discussion.  She eloquently provides an account of her experience with Healthy Privilege and her attempts to provide real advice and input to 'hypemeisters' who create and promote digital/mobile health devices for those suffering from chronic illnesses.  “It’s been said that coping with a chronic illness every day can in itself feel so overwhelming that being expected to embrace an extra task like self-tracking is simply too much. It’s what Dr. Victor Montori and his Mayo Clinic-based team call “the burden of treatment” in their important work with chronic illness and Minimally Disruptive Medicine. But this reality must sound foreign to those living with the luxury that healthy privilege provides.”

This is a great example that resonated with me as a promoter of digital health solutions and believer in the empowerment of ownership of personal health information.  But does it illustrate Healthy Privilege?

I’m a bit at odds with the term.  While I completely agree that there is a lack of understanding in both the healthcare system and society at large towards individuals who suffer from chronic  illnesses, does ‘Healthy Privilege’ describe the issue?  As opposed to our skin colour or gender, our health will change throughout our lives and it is an extremely broad term that is shaped by multiple determinants.   The majority of us are born healthy and as we age our risk of becoming ill increases.  Most of us, at some point in our lives will experience what it means to be ill, in pain or unwell. 

The lack of empathy described by Ms. Thomas is one I can relate to.  After being diagnosed with malignant melanoma fourteen years ago I experienced one of two reactions from those I chose to confide in.  The first reaction was one of overwhelming concern and belief that the cancer was a death notice; the other was a shrugging dismissal that skin cancer isn’t really Cancer, and that I look "just fine".  The most damaging experiences were those of blame, not just from uneducated friends, but knowledgeable healthcare providers who responded to my need to understand “WHY?” with accusations of sun worshiping and other unhealthy behaviours that I did not participate in and could not defend.  I confided in very few people. 

Where I did find comfort, empathy, support and information was on the Melanoma Patients Information Page.  Despite being told by my doctor not to seek information online, I did.  There I found a community of people who understood what I was going through.  For me, this was enough.  My illness, like the colour of my skin and my gender are only parts of my whole, none define me.  Heart Sisters provides an equally valuable service by connecting women with a common illness and providing an understanding, knowledgeable and comforting community to share their experiences.

Identifying Privilege requires self-assessment.  While everyone could benefit from this, it is important that those who manage the difficult task of informing us when we change from Healthy Privilege to illness take the time to reflect on the concept.  The term ‘bed-side manner’ used to be used (maybe still is) to refer to a doctors manner, attitude and decorum in front of a patient.  Let’s revisit that as a starting place.  Why not a mandatory class in medical school, Bedside Manner 101?  As a second step let’s see some performance measures attached to healthcare providers that measure patient satisfaction with their service.    

In Canada, the CBCs Fifth Estate just released as show called ‘Rate My Hospital’ that examined over 230 hospitals across the country using some traditional indicators and some satisfaction surveys.  Similar to the American CNN movie ‘Escape the Fire’, this exposé focused on educating healthcare consumers and engaging them in the dialogue on solutions. 
  

I can accept the concept of Healthy Privilege as a component of our society, as Ms. Thomas herself stated “until I survived a heart attack in 2008, I too had been fairly bursting with that sense of healthy privilege myself.  I knew nothing about what it might be like to live with a chronic and progressive disease every day of my life – and why would I?”  

What I cannot accept is an autocratic healthcare system, the use of blame to shame healthcare consumers, and poor service when my 50% of my tax dollars are funding a multi-billion dollar system.  Let’s bring the concept of Healthy Privilege into our discussions on how to improve our healthcare systems. Let’s start there.

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

Time for healthcare to get a Pep Talk!

We all need a pep talk from time to time.  This week Kid President gave me one.  If you haven’t seen his Pep Talk, watch it now. 

Robby, is age 9.  He has Osteogenesis Imperfecta (OI) a brittle bone condition which has resulted in him having over 70 breaks since birth. What's inspiring about Robby isn't his condition, but the fact that his condition doesn't define who he is. In spite of all he's been through he not only keeps going - he dances.

All those working on improving the healthcare system should take note of his good advice and healthy attitude. 

1.       Stop being boring!  The healthcare system is not working, it’s messed up.  It’s time for a creative solution!   Change is tough but it’s time to change the status quo, even if it’s only a tiny bit.  Our bodies are complex systems, supported by a healthcare system that is even more complex.  There are no easy simple solutions.  Stop waiting for someone else to fix this.   Stop complaining about it and finger pointing that’s boring and a waste of time and energy! 

2.       Are we on the same team?  Healthcare professionals, governments, insurance companies, pharmaceutical companies, healthcare consumers and self-described saviours of the healthcare system.    It doesn’t always seem like we are on the same team, working towards the same goal.  Providers putting profit ahead of care, drugs that cause more harm than good, policies that are too short sighted to achieve any positive change, consumers that don’t take personal responsibility for their decisions.  If we are all on the same team we should be working towards the same goal.  All of us living with optimal health.  Let’s each take some personal responsibility to make one small change for the better. 

3.       This is life people!  It’s short and it’s fragile and we should make the most of it while we are here.  Our health has a lot to do with how long we get to live and the quality of that time.  There are lots of factors that will impact our health so pay attention to all of them.  Good health relies on more than a good healthcare system … lots more.  Lifestyle behaviours, education, social connections, environment, employment, culture and gender all play a role in how healthy we are.  Manage what is within your control and work with those factors that other people control.   

4.       What will be your Space Jam?  Maybe it’s a lifestyle change that will help you live longer and healthier, or opening up communications with your patients to engage them more in their care, or maybe you have an idea that will improve the system or make life easier for people.  Don’t give up.  Believe in a healthy you, a healthy community and a healthy world. 

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