Is any diagnosis ‘terminal’ anymore?

“It’s terminal! Go home and put your affairs in order.”  By definition, a terminal illness is a disease that cannot be cured or adequately treated and that is reasonably expected to result in the death of the patient within a short period of time

Is any diagnosis really terminal anymore?

Medical advances are occurring every day, clinical trials are contributing to our knowledge of what works/doesn’t work and patients around the world are sharing information in online communities.  Is it feasible to think that our doctors are on top of all this information for every illness in order to accurately declare that an illness cannot be cured or adequately treated?  Maybe we need to redefine the word or, better yet, get rid of it entirely. 

This is not to put false hope in the heads of patients exhausted by attempts at ineffective treatments whose quality of life has deteriorated while fighting an illness.  Those patients may very well accept that everything has been done, and accept that their illness will take their life in a reasonably short period of time.  But, what about patients like Sam (not his real name), a middle aged man I came to know last week.  Not too long ago Sam was going about his normal routine, working, enjoying the summer, feeling fine but he started falling asleep at his desk, and it happened more than once.  A trip to his doctor and an MRI later showed he had brain cancer.  The prognosis was grim, chemotherapy and radiation were offered to buy him a few months.  He was told it was terminal and he should ‘get his affairs in order’. 

About the same time,  on the other side of the Atlantic ocean, thirty-nine year old Salvatore Iaconesi was given a similar brain cancer diagnosis but he decided to crowd source his opportunities.  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.  The responses are all stored on his website for anyone to access.  His most recent posting indicated that he will soon be undergoing surgery, the first step in his strategy. 

This personalized approach to a treatment strategy makes so much sense but it takes time to identify all the options, balance the pros and cons, and make an informed decision.  Perhaps instead of advising people to ‘get their affairs in order’, doctors should give patients their data and simply acknowledge that they cannot cure or treat your illness and without effective treatment your illness will kill you in the near future.  With your data in hand, it is up to you what to do next.   

In the same way that we donate our bodies to science why don’t we publish our rare diagnosis and clinical data online to share with a community of people looking for the same answers? Facing a terminal diagnosis, I would do all I could to save myself but if that were not possible I would want the evidence of my efforts and outcomes recorded so that others could learn and benefit. 

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

Even Fainting Goats have heroes

Meet epatient Dave!!   I encountered Dave last year online through a TED Talk and was inspired by his story of empowered patients and survival.    Dave expounds on the idea that the most underutilized resource in healthcare is the patient and he should know, he beat the odds and is alive today to tell his story.  Dave deBronkart: Meet e-Patient Dave 

 “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.  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. His remaining lesions have continued to shrink.  You can follow Dave at epatientdave.com.

The amazing element to Dave’s journey (beyond his survival) was that he learned about the specialists and clinical trial that saved his life on the internet from other cancer survivors, not from his doctors.  Dave is now well known for the #epatient movement but I wonder how intimidating it was for him at the time of his diagnosis to be that voice in the wilderness, working against the healthcare system to get control of his data to save his life.  I hope that Dave is feeling some satisfaction these days in that his voice continues to contribute to the ripple effect of the empowered patient that is finally being heard and understood.

In the US, the Affordable Healthcare Act (otherwise known as Obamacare) mapped out a plan to incent doctors to have their patient’s access, share or download their records online.  In order to receive the Incentive, doctors have to prove that 5% of their patient’s access download or transmit their medical records.  5% is a small start, but it’s a start.  With the American election now over and Obama securely seated in the White House for the next 4 years, the work on empowering patients through Meaningful Use can continue in the United States.  NOTE:  Apologies for the physician-centric hyperlink, there is sadly little education material out there on Meaningful Use for the people who need to understand it most, healthcare consumers. 

There is a lot of policy debate and medical opinion out there about patient access Rights and Responsibilities 101, but the success of empowering patients will only come from one place.  It will come from individuals recognizing and demanding control of their health information.  Dave did it, you can do it too, just say Gimme my Dam Data.

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

How do we value Personal Health Information

This week I had coffee with a colleague and the conversation came around the challenges of accessing personal health information.  The concept of a personal health record was new to him and his first and immediate reaction was “I don’t want to control my health information”.  The thought of managing his health history was overwhelming; he instinctively believed it to be beyond the time, energy and expertise that he had to offer.  He saw no value in it.

 I smiled and said “in 15 seconds I can convince you that you DO want to control your personal health information”.  The gauntlet was thrown.

My colleague is a business professional in his early fifties, successful with a loving family and no significant health issues.  “Do you travel often?” I asked.  “All the time” he responded.  “What would happen if you collapsed in another city, province or country?  Would you want emergency personnel to know about any health conditions, prescriptions, allergies, what blood type you are and where to reach your emergency contacts?”  A light went on.  He was beginning to understand the value of his health information, what it could mean in an emergency situation, how it could potentially save his life. 

How we value our health information differs for each and every one of us depending largely on our current health status.  While I don’t have the statistics at my fingertips (although I’m sure there is a study out there somewhere), I’m certain that the value we place on our health information increases when the condition of our health decreases.  My colleague is a healthy guy, he doesn't think about his health information because he doesn't really think about his health.  Taking our good health for granted is just human nature.

A few days ago I read about a young woman who probably never takes her health for granted. Suleika Jaouad lives in New York City and is chronicling her experiences dealing with cancer in Life, Interrupted .  Super storm Sandy disrupted more than her access to cable television and public transportation, it disrupted her chemotherapy treatments.  She was in an evacuation area and had no electricity, hot water, cell phone service or heat.  This week she wrote about the impact of Sandy.  “For me, as a cancer patient, it also means that it is challenging to get a hold of a doctor, find my way to a hospital or get emergency medicine if I need it. Sewage mixed with the storm water flowing in the streets, and I was worried about the risk of infection.” For her, the value of having access to her personal health information may be the ability to quickly access treatment in another city when disaster hits. 

At the opposite end of the health status spectrum, a friend commented recently that her eye glass prescription had been sitting on her kitchen sill for 3 months and wouldn't it be great if she had it electronically and didn't have to remember the piece of paper.  To her, the value in having electronic access to her prescription information was the convenience of not having to remember a slip of paper.

Our health issues are important to us whether we are coping with a serious illness that involves multiple interventions or we are inconvenienced by the need for a stronger prescription to address our nearsightedness.  When dealing with a health issue, we want solutions.  Taking control of our personal health information can make finding and managing the solutions more effective and efficient and, therefore, valuable.  

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