Roller Coaster of Life

Life is a roller coaster. There are many ups and downs. I like to really focus on the ups, but sometimes it's not always possible. Right now is one of those downs.

David was diagnosed with cancer in August 2001. On April 2, 2006, five years after living a fulfilled life, he came home on hospice. It was the beginning of a ten week process that still resurfaces as a bittersweet memory every spring. However, like in 2006, life doesn't stop when April begins. And no matter how much I stare at the clock, time does not slow down. In fact, it almost seems as though during this time, my plate gets fuller as though I am being pushed to the limits and tested. I know that God would not give me more than I can endure and many times I have to take a step back and realize that I can do all of this and more. That is the strength of a caregiver...we keep enduring.

And I know that I am not the only one going through this. I know that at any given day, at any given minute, even second, there are people feeling the exact same feeling I am right now. And that is what gives me hope and strength to continue,.

I am back on my way up.

David & I in 2005 enjoying time together because we knew time was short. Behind us is a picture my daughter, Faith, drew of our family.

Big Words

"The heterogeneity of the vitreous humor on T2 weighted MRI sequences is pathognomonic for sticklers syndrome which is a relatively common collagen disorder."

What does the sentence above mean?

A friend of mine is a radiologist, so I asked him to give me a sentence in what I refer to as "doctorese," which is my term for the language that doctor's use, that no one except those in the medical profession understand.

I asked him what that statement above meant. He wrote "Your face is flat due to an inherited disorder of your collagen fibers that make up all the soft tissues in your body."

So that seems basic enough, correct? No. I still don't know what this TELLS me. Is this bad? Is this something I need to worry about? Since it's inherited, does this mean my children will have this? Collagen is fat right? I have fiber in my body?

I asked him to break it down even further. He sent me the Wikipedia article for Stickler Syndrome. I told him I wanted his break down of the information. He then said, “Nothing is to be done with that. They usually have poor eye sight. That's really it. They may have mitral valve prolapse which may put them at increased risk for heart failure. They also tend to get arthritis."

Do you know what a mitral valve prolapse is? Do you understand heart failure? Arthritis? It seems one question is answered, with new information that I then don't understand.  

Health literacy is defined as "the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions." (NNLM.gov, http://nnlm.gov/outreach/consumer/hlthlit.html)

This means reading, listening, understanding, and decision making.

A problem arises when people need to make decisions based on information given to them. How can they be expected to make good decisions, when the information is difficult or impossible to understand?  Regardless of your socio-economic background, health literacy affects everyone.

Doctors are full of knowledge, and have the skills to save lives. We as patients want to understand what they are doing to help us. There needs to be a communication bridge between the doctors and the patients, to make sure the best care is given and how it will happen is understood.

 Do you have experiences like this?

Warriors in the Struggle

Being on the frontlines has kept me away from blogging, but I am back because I realized that for change to occur reports have to come back from the frontlines. I am the voice of the war occurring in health information technology.

My first post gave some background about how I became an advocate for Health Information Technology (HIT). But what you don’t see is why I continue this journey. The original flame that was lit was due to my husband, David, and his experience with cancer. However, I meet people and hear stories that continuously fuel my passion.

A dear friend of mine, Donna, told me a story about herself. She has been dealing with chronic pain issues for many years and has been to a lot of specialists and has been tested for many conditions. When she started looking for answers to her pain, it was 2005. During this time the field of HIT was just developing, so she carried around an accordion folder that held all of her test results, bills, correspondence, and actual copies of her tests on CDs. She was constantly fighting with health insurance agencies about what tests were done and whether or not she had paid for tests and co-pays, which is why she began hoarding all of her health information. She carried this accordion to every doctor’s visit, no matter what it was, because she found that none of the doctors knew about what the other doctors were doing to assist her in diagnosing the source of her pain.

It took her seven years to be officially diagnosed with Fibromyalgia. Donna just celebrated her 28^th birthday. The idea that it takes seven years to diagnose someone is obscene but happens all the time. When looking at forums where patients talk, it is clear to see that this is a pattern. On each of these forums everyone wears the badge of a warrior, indicating how long it took them to be officially diagnosed. I KNOW that with the use of Electronic Health Records and Health Information Technology, this experience would have only been a small battle versus the long war that people have to fight. Donna’s health issues could have been identified earlier, she could have been placed on medicine, ultimately understand what was causing her pain, and participate in major health changes to better her life.

Donna has put down her accordion folder and picked up a new set of weapons in the fight to empower others. She works with me now educating people about Electronic Health Records, Health Information Technology, and Health Information Exchange. While she still fights the battle with her health, she has joined in the struggle to get the word out that there is hope and health IT can be a powerful weapon for change.

I know there are limitless stories of individuals who have lost valuable time due to the lack of effective use of Health Information Technology. I want to hear your stories. I want to be your voice. Tell me about your struggles.

Health IT and Patient Safety....The IHI Experience

As a patient advocate, I wasn’t sure what to expect when I attended the Institute for Healthcare Improvement (IHI) seminar, “Person- and Family-Centered Care: Transforming the Patient Experience.”  I arrived to find a room full of people who came together from all over the world to talk about how to engage patents and their families in the design and delivery of healthcare. Having spent five years as a caregiver, I know patients can be a part of improving the care a loved one receives. So now, I work to examine how technology can be introduced in healthcare journey. I came looking for answers on how to engage technology such as electronic health records and health information exchange with patients and caregivers to meet the triple aim of healthcare of better care, at lower costs, with better outcomes.

Patient Family Advisors described how their experiences shaped them to becoming a valuable part of a healthcare system. They not only described the challenges they faced, they shared their lessons learned in a way that were easy to apply to any situation. The patient voice was heard throughout the event from an IHI staff member’s description of how she became involved with IHI after a battle with breast cancer, to the musician who serenaded us during lunch with song he wrote for his dying wife to take her mind off the side effects of chemotherapy, to the a gentleman who poignantly recounted how he had been pushed by the red coated valets at the Cleveland Clinic just like then gentleman in the Cleveland Clinic Empathy video.  The patient voice was heard in every aspect of the event.

I encourage all organizations who are looking for ways to incorporate patient engagement into their mission, look for opportunities to allow the patient voice be heard, whether it be through patient and family councils, or having past patients or caregivers help design those places in the hospital where they spend countless hours; ask a former patient or caregiver to share their time and talents with your organization. You see after we go through this journey, we want to give back and possibly make it better for those unknown others who will take the same journey

So what happens next? For me, it is to provide the business case for patient engagement while my clients work to meet their reporting requirements.  One example is incorporating bedside huddles to allow patients and family members the opportunity to be involved in the conversation. There is valuable information that can be retrieved from electronic health records as long as it is entered accurately. During bedside huddles, documentation being placed in the electronic health record can be verified by the patient and/or family. There is value in having patients involved in the design and roll out of patient portals. They can help us identify what personal health information patients would be most helpful in engaging them in their own healthcare. Patients and families can help ensure better quality patient generated data is entered into personal health records. Better quality data entered into a health information exchange, allows the patient to have the right information when and where they need it no matter where they are in a healthcare setting.  When good quality data is available about a patient, healthcare organizations can use the data to create information which can be used to lower costs and help drive better outcomes. Electronic health records and health information exchange can be used as the great equalizer to provide health equity for all.

 

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.