Monday, April 26, 2010
On Tuesday April 20th I testified as a member of Panel 1: "Meaningful Use of HIT in the Real Lives of Patients and Families" at the HIT Policy Committee Meaning Use Workgroup. Dave DeBronkart testified on Panel 2: "Incorporating Patient Generated Data in Meaningful Use HIT". Most of the speakers in the room had been working in medicine or HIT for many years. If you looked in the agenda you would see a presenter's name and where they worked. There was an amazing amount of talent and work experience in the room. Representatives were there from Epic, CVS Minute Clinic, Johns Hopkins University, Intel and several other parties. First you saw their name and then you saw where they worked.
If you looked at my name, it said, "Regina Holliday, patient voice."
If you glanced at Dave's name it was: "Dave Debronkart, ePatient Dave." We joked beforehand that we must be the Wonder Twins. Dave is seeping throughout the Twitter-sphere promoting participatory medicine. He is part of the current that is washing away an old system of a patriarchal division of labor in medicine. And I will change into whatever form is needed to bring patients' stories to light. I am the quiet painter. I am the outspoken critic demanding access to the record. I will turn into whatever animal is needed to effect change. Together we are powerful. Patient voices are strong when they call out in unison demanding change.
Regina Holliday, patient voice. It was a rather ironic title in view of my testimony, for I am not very patient anymore. I stated in my testimony, "In closing , I recently saw an ad from the American Hospital Association promoting adoption of electronic health records using an 'incremental and realistic policy'. The images in the ad contained doctors and technology, but there was not a patient to be seen. When I speak of HIT, I am speaking about lives, not livelihood. Patient access can save lives; it can stop soul-crushing fear. I have spent this last year fighting for information access, and I say the time for incremental change has past. This is the time we demand our rights to see our data."
I listen to my friends working in patient safety and my friends in information technology, and I hear. I hear the part of the tragic story where information access could have changed outcomes. I hear how experiences could have been better and people could have lived. I think of how different the medical world would be if instant access was the norm rather than an ideal I fight for.
I remember many years ago getting ready for my wedding and check-proofing the invitation. I remember combing over the wording trying to make sure it was very clear. The print shop clerk said they would not print it without it my authorization. I remember many IEP meetings for my son where I went over pages and pages of documents correcting errors and amending the record so my son would have the best education opportunities available to him. I remember proof-reading ad-copy for Jayhawk Bookstore when I managed it. The paper would not go to press without my sign-off on the ad.
I remember all of this, and I remember siting in a hospital for days begging to see my husband's medical record.
Why are we competent and able when it comes to our weddings, our education, and our jobs, but suddenly when it comes to data about our lives, we are not given access? I sit crying at the computer screen when I think of Sorrel King. Do you think she would have missed the order for oral hydration for her young daughter if she had had timely access to the record? What if the hospitalized patient had a daily treatment summary instead of only an after-the-fact discharge summary? How many lives would be saved? How many Freds would have the catheter placed before infection? How many Josies would avoid a fatal dose of pain medication? How can we wait any longer?
Comic book super-heroes and patients may seem to have little in common. Perhaps you think it wrong to put them together in a blog post. Death and ink, paint and sorrow: they sit side-by-side in life and cannot separate even when the subject is deadly serious. We need our heroes. We need those people and patients who will stand up and speak against the status quo. I recently read a very good article called Story Power. Here is the link. It explains this relationship in depth. Fred would be so proud. He was a firm believer in the power of stories. He would be so glad to know that patients' stories are changing and saving lives.
I am glad Dave and I can help create a better world for patients. I am glad that we can activate change. Patients may seem a little annoying at times, but we can help save the day. We are a vital and important part of a much larger Justice League.
Thursday, April 15, 2010
Sunday, April 11, 2010
Community Rummage Sale
Sale to be held at
St. Paul’s Lutheran Church
proceeds will help fund the
St. Paul’s homeless shelter
other local homeless charities
May 1st at 8:00am to 1:00pm
Please Drop off Donations at
St. Paul’s Lutheran Church
4900 Connecticut Ave. NW Washington, DC 20008
Small item drop off Sun-Thur: Books, Clothes, Knickknacks, Toys, Small appliances, Etc.
(Please Drop off Large items on Friday the 30th)
Drop off available Sunday the 25th 12:00-3:00pm
Mon. 26th,Tue. 27th and Wed. 28th 3:00- 6:00pm
Thursday 29th & Friday 30th 3:00pm-7:00pm
Tax receipt is available at time of Donation.
Questions? Regina Holliday at email@example.com
Thursday, April 8, 2010
Before the real story begins, first we experience a tragedy. This is often the premise within children’s literature. First you have to kill or displace a parent, before Harry Potter, Percy Jackson, Taran of Prydain or Rosalind Penderwick can go on to their adventure. Their personal tragedy or crisis creates the impetus for the characters to act in a new way; therefore furthering the plot. Such crises induced action does not exist only in children’s literature; but instead, is a mainstay throughout our culture. Every day individuals must make critical medical decisions based on their of their disease. Patients must make choices on whether to seek second opinions after being confronted with a dire diagnosis. As Thomas Goetz states in the book The Decision Tree, in a chapter focusing on the results of a 2008 study on smoking and obesity, “ Whatever its form, a true crisis can serve as a catalyst for change, the researchers concluded, a mechanism that disrupts the course of normal life and arouses a reevaluation of identity. It puts meaning together with behavior change. A health crisis gives people permission to behave in a new way.” Patients and their families should become empowered in the decision making process as a result of experiencing a medical crisis, and thereby, choose a new and better life path.
ePatientDave used to be a regular guy with a regular name. He was born in 1950 and named Dave deBronkart Jr. He worked for many years in multiple industries before becoming a member of the IT movement in 1989. In January of 2007, he was diagnosed with metastasized renal cell carcinoma stage four. Most patients die within months of this diagnosis and there is a less than 5% survival rate for the two years following diagnosis. Dave, as an experienced Internet researcher, used every search engine at his disposal to research and help decide the treatment options for his disease. He and his collaborative physician decided on laparoscopic surgery and he participated in a clinical trial of high-dose interleukin-2. The dual treatment was successful and he is now cancer free. His whirlwind experience in trying to get the correct treatment within a short time window; informed his choice to take a new life path. Dave is now a public speaker and blogger on patient empowerment, participatory medicine and patients’ rights. At a recent ONC meeting, he was introduced before doctors, government officials and software designers as ePatientDave. He is known by a superhero name. His crises of medical care created a new name and a new life path for Dave in which he speaks out and helps others.
Just like Dave, Lisa Lindell was once a regular person. She worked in an office. She was a loving wife and mother. In March of 2003, everything changed. Her husband Curtis* was burned by an electrical fire. He was hospitalized in Texas at a major medical center. She experienced first hand the problems with patient care in the United States of America. Curtis was hospitalized for 108 Days. He suffered through skin grafts, fluid in his lungs and multiple infections. If Lisa had been unable to be a constant caregiver at his side, Curtis would have died. Lisa was a strong empowered caregiver throughout most of Curtis’s hospital stay and to this day helps the disabled Curtis with daily living. She routinely speaks on patient issues and hospital acquired infection. She wrote a book on her experiences caring for Cutis, and believes it is her duty to get the word out to as many people as possible. Her life was changed forever by her experience caring for her husband and she hopes to make the world a better place for patients and families.
*Name changed to protect the individual.
Trisha Torrey’s crisis, was the result of no crisis after all. Trisha had a biopsy on an unusual growth in June of 2004. The oncologist told her she had a diagnosis of a rare cancer called Subcutaneous Panniculitis-like T-cell Lymphoma (SPTCL.) It was a very lethal and aggressive cancer and he recommended immediate chemotherapy. Trisha was concerned because after researching her diagnosis; she did not have the other symptoms of so dire a disease. She said no to taking such a toxic treatment without a second opinion. Her doctor “fired” her for her decision, but Trisha was right- she did not have the disease. Her experience in “almost” having cancer made her decide to be an empowered patient speaker and blogger about patients’ rights. She wrote a book on the subject called You bet your life!: The 10 Mistakes Every Patient Makes. Trisha took a potential tragedy and turned it into an opportunity to help others.
So these three people, like many fabled heroes in a children’s tale, decided to take the worst thing that happened to them and turn it into the best of life-affirming choices. They decided to confront a patriarchal medical system and instead work toward a collaborative model. Just as Professor Dumbledore, told Harry Potter in Harry Potter and The Goblet of Fire, “Dark and Difficult times lie ahead. Soon we must face the choice between what is right and what is easy.” It might been easy for Dave, Lisa and Trisha to go back to their regular lives. It might be easy for patients to give up ownership of their own medical outcomes, but is it right? Each Patient and caregiver has within them the elements to make a hero. Dave, Lisa and Trisha faced their choices and because of that live empowered lives helping others. Darkness must come before the dawn in every life, as each hero creates a path towards their happy ending.