What Meaningful Use Means to Me

ONC has declared 2012 is the year of Meaningful Use.  Let us prepare in 2012 to make it as easy as possible for patients and their healthcare providers to access vital medical data.  Many patients think that interoperability, the ability to transfer their health data electronically between different systems, is happening every time they go to the doctor. I wonder how many times a day patients ask healthcare providers, “Don’t you have that?” and how many times a clinician says, “No, we have to get that information from XYZ.”  The general misconception is because the person at the front office checks you in on a computer your records are in an electronic format, and all it takes is a click of a mouse to move the healthcare data from one place to another.

Meaningful Use is being used as the motivator for healthcare providers to make the move to being able to say, “Yes, I just downloaded what I needed.”  The use of electronic health records unlocks the door to many possibilities. In my opinion I would say the most important feature of using an electronic health record is that is allows spouses to be spouses, friends to be friends, and families to be families.

Did you know that the first 90 days of a diagnosis can be the hardest for a patient and their support system? For those of you with children, do you remember that moment when your whole life changed in an instant? You realized you were never going to be same again? Getting a diagnosis is the same way. You give birth to a whole new life. It is a life filled with uncertainty. You have been catapulted into the world of medicine. There is a new language to learn, there are new people to meet, there are new systems to negotiate, and you have never been so lonely. Everything that you knew is now compromised. You start to die a thousand little deaths every day. You die to the dreams of growing old with your loved one. You die to the future of watching your children grow up, you die to the dreams of being a team. All of the experiences of life you took for granted are now gone. They are slipping through your fingers like grains of sand in an hourglass. The difference is when the sand runs out; there is no one to flip it over. There is nothing else, this life is over.

You see this is not just the story of the patient. It is also the story of the caregiver. The caregiver by default becomes the caretaker of the information. The pressure to make sure every piece of paper is where it is supposed to be, and making sure your loved one is getting the best care possible is like a crushing boulder. You second guess everything you do. When you ask for your loved one’s health information, you pray someone will have compassion and explain what you need, what the right questions are to ask, and where you can go to get what you need.  It is humbling to be grateful because someone was nice to you. You feel like a beggar who has just been given something to eat you did not have to pick out of the trash.  You quickly become a warrior in a fight that you have no control over.  You struggle for every breath you take. You get up every day to face another battle because you know every single bit of effort you put into this fight might mean just one more day to make a memory with the one you love.

When a patient has their healthcare data available electronically, and it can be exchanged, the caretaker can now concentrate on making memories with a loved one. Caregivers are no longer the ones responsible for making sure the data gets to where it needs to be. Data is available with the click of a mouse.  Every key stroke the clinician makes buys a patient just a little more time to make a memory.  Every key stroke unlocks the chains of inefficiency, and frees the caregiver to be the spouse, parent, child, partner, or friend to someone who is facing an insurmountable task….to live.  

This is the definition of Meaningful Use to those that negotiate the world of healthcare every day. Let 2012 be the year of Meaningful Use. 

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.