Facing the Giants

This will be my first blog post about electronic health records (EHR) health information technology (HIT) and health information exchange (HIE), and hopefully not my last.  

Why write a blog about what health information technology? I write because I have a story. To be honest, it has taken me a long time to convince myself that my story counts.  Thanks to the support of my friend Regina Holliday, I now know that it does not matter what the giant of insignificance roars at me; me, my experience, my story, it counts. 

I am one of those old souls of health IT…here is my story:

I am an advocate for the use of EHR because I know the value it brings to the patient experience. Ten years ago, my husband David was diagnosed with primary brain cancer.  He was one of the earlier VA patients to experience the use of VISTA the VA's EHR.  I do believe because we were such a young couple that those in the medical system were willing to think outside of the box and offer us every opportunity that was available, even if it was experimental.

VISTA allowed David's treatment to be coordinated across the country.  We were living in Portland, OR, and the doctor that was directing his treatment was across the country in North Carolina.  Our neurosurgeons in Portland were able to send the doctor in North Carolina all of David's treatment information electronically, reducing the time to form a treatment plan from weeks to days.  Time for us was precious.  We had three children who were 7, 4, and 1 and every moment that David had with us was precious.  We were concerned not only with his quantity of life, but his quality of life.  David lived through this when he was a child.  He lost his mother to breast cancer at the age of six, and had few memories of his time with her. He was determined to make sure that his children would have memories of him when he was no longer here.  That is where the blessing of EHR comes into play.  It allowed us to be a family and beat the average lifespan on a brain cancer patient. It allowed David to be there for the first day of school for all of our children. That is the gift that health information technology gave to us. 

When we had to sell our business and relocate to the east coast, I did not have to carry the majority of his health records or carry a copy of every MRI he had over the last year.  Those went electronically.  I did have to carry his prior military records and the second opinions. Those took time and money to get….both of which we had little of.  The VISTA system allowed us to receive cutting edge treatment, b/c the expert that was across the country had an opportunity to look at all of David’s records from the diagnosis of his disease to the time of his passing. He was monitored not by one doctor; he was monitored by three doctors, no matter where they practiced or where we lived.  They all had a chance to look, comment, and decide on the most effective treatment plan.  I am probably the atypical caregiver of a VA patient. I thank the VA for having a technology in place that allowed David to meet our family goals: seeing our youngest daughter Faith turn six and that David would live to see his 36^th birthday.

David met those goals and died on June 6, 2006.  For others it seems a bad omen, but on the contrary; for me it was God conquering the pain and injustice of this life, David was made whole.  In the Jewish culture numbers have meaning: 6+6+6=18. In Hebrew 18 is the number of life.  I know it may not mean something to others, but it holds a promise to me.

I still have not reached the end of my story: I believe that God gives us in addition to-not instead of:

In 2008 God brought me Jim. Jim and I were both working on Federal grants and he worked in health information technology.  When he explained what he did in HIE, I finally understood what I had experienced was not the normal experience for most patients.

I started to study the field with a hunger to know and understand the HIT field.  I even gave my services away for free so that I could get the experience to get hired in the HIT field. 

I now work to bring understanding to MU and HIE because I know that the purpose is not to burden the physician, but it is to free the patient.  Healthcare is moving towards a collaborative relationship between physician and patient.  It is no longer the doctor saying “Because I am the doctor and I said so.”  It is patients saying, “This is my life, let’s work together to get me the best care possible.”  The tide is changing, and I love that!  I have been waiting for the industry to be ready for this for the past three years.  We must work together as one voice to create change.  The voice is comprised of patients, clinicians, and information technology and we must learn to speak the same language to speak change into existence.

This is my passion, this is my life.

I have faced many giants in my lifetime: sickness, death, loneliness, and unknowing. Now I face new giants: familiarity, fear, change, and the unknown. These are the giants the healthcare industry is facing in light of new technology, new standards and a more informed patient population.  

So now I will be like David and place the smooth stone of my story about the gift HIT gave me and my family, put it in my sling and swing with all my might and let it fly through cyberspace to strike down the giant of inefficiencies in medicine.  I have been a patient, I have been a caretaker, I work in HIT, and I know the power HIT brings.

My job is to make sure the public knows that HIT:

Gives us the power to be as healthy as we can be,

 it gives us the power of knowledge to make good decisions about our healthcare,

 it gives us the power to live full lives because we can trust our medical treatment,

and sometimes it gives us the power to be free.

So now I ask all of you to stand with me and strike down the giants that keep us from embracing the technology that can help bring about improved patient care.  Help all of us on the front lines tell our stories to those who can bring about change.

For a list of speakers who are engaged and who can speak to the patient experience go to: www.speakerlink.org.