Today the Department of Health and Human Services announced what criteria doctors and hospitals will be required to meet if they want to receive payments to help buy the Health IT needed to computerize patients’ medical records. Under the HiTech Act’s incentive program, Medicare and Medicaid will be giving out some $27 billion over the next ten years. The program begins next year. A doctor can receive up to $44,000 under Medicare and $63,750 under Medicaid, while a hospital can receive millions of dollars, depending on its size. (Starting in 2015, hospitals and doctors will be subject to financial penalties under Medicare if they are not using electronic health records.)
The rules boil down to this: providers who want to be eligible for incentive payments will have to show that they are making “meaningful use” of electronic health records (EHRs)—i.e., that they’re not just using them to expedite billing , but that they’re using EHRs to improve patient care.
For example, under the final rules doctors will be expected to transmit more than 40% of their prescriptions electronically, hospitals must be able provide more than 50% of patients who are discharged with an electronic copy of discharge instructions if they request it, and providers must produce an electronic copy of a patient’s medical record within three business days to more than 50% of patients who request it. Click here for a summary of all of the rules.
Regina Holliday appeared at today’s announcement to stress just how important patient access to a medical record can be. Below, she tells the tale of what happened to her husband, Fred, after he was diagnosed with Renal Cell Carcinoma and hospitalized.
What is striking about her story is that Holliday is not complaining that the hospital didn’t “save” her husband. She is objecting to how little information she and her husband received: “the terror of not being told what was going on.” In other words, this is less about what treatment he did or didn’t receive than it is about how he was treated. Holliday is calling for “patient-centered care” that includes the patient in the decision-making loop, giving him the information he needs to make an informed choice.
This piece originally appeared on Regina Holliday’s Medical Advocacy Blog in October of 2009 where it was titled "Thoughts on Medicine and Social Media." Many thanks to THCB’s Matthew Holt who cross-posted Regina’s story in October, and wrote about her appearance at today’s "meaingful use" announcement. Holt describes her as “the poster child for why access to health data matters to ordinary people," adding: “we need to get her from the world of webinars, Health 2.0 Conferences and HHS announcements onto Oprah and the 6 O’Clock News right now.”
I agree, which is why I’m posting her story here on HealthBeat. (It's not Oprah, to be sure, but unlike the 6 O'Clock News, at least I can give her more than a soundbite.)
Thoughts on Medicine and Social Media
On March 27 my husband, Fred Holliday, was diagnosed with probable Renal Cell Carcinoma (RCC) . Within one day, I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. To help my husband receive the best care, I surfed the internet at night; researching his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook became the information source on Fred’s medical status. I would take a few minutes each night to post to the 100 plus people following Fred’s care. Within days of diagnosis, two of my friends had set up a "Lots of Helping Hands" account. This online network, which rapidly grew to 150 volunteers, would fundraise and provide meals, babysitting and groceries. This pool of helpers was immensely diverse. Before sites such as Lots of Helping Hands, orchestration of a volunteer effort this complex would not have been possible.
My husband was the model patient: he never complained or caused trouble. We were at the first hospital for four weeks with the only treatment being palliative radiation. My husband walked into that hospital but by week two he could no longer stand and could barely sit. We had no chemo or surgery. I wanted to know what was going on, so on Friday, April 17 I went down to medical records to ask for a copy of his chart. They told me it would be 73 cents a page and a 21 day wait. The next day the oncologist came into the room. It was 9:30 AM on a Saturday. We had a list of questions ready. We had questions like: "When will we have surgery?" The doctor had a different answer. “We have decided to send you home on a PCA [patient-controlled analgesia or pain-killer] pump. ” I found out later that “we” meant the hospital, the oncologist, and the insurance company, all privy to this decision days before Fred and I were. I had done my internet research. I knew exactly what was going on. This was home hospice. Fred was being sent home to die. The doctor left the room. We cried. Then Fred told me to go after them.
We had to suffer and wait that entire weekend, but on Monday I took action. I fired the primary who never visited. I asked my own primary if he would take on Fred. He did and could get him transferred to another hospital. I found an oncology group that said they would see him. I spent three days organizing the transfer. Fred’s nurse navigator from his insurance company was so frustrated by how hard it was to complete this transfer that she was crying to me on the phone. I was warned by an internist that this was not how things were done. The oncologist stormed angrily into Fred’s room saying, “So you are transferring? Well no one will give you surgery.” He left and I told the head nurse I wanted him barred from the room.
We were transferred on Wednesday April 22. We were sent with incomplete and out of date records. Fred was denied care for six hours while the nursing station tried to cobble together a record. Without a current, MAR [medication administration record] they came to me to ask what kind of patch is this and when was it placed? Both Fred’s lidocain and fentanyl patches weren’t labeled or dated. Five days before I had asked for the medical record. If only it had been given to me then, Fred would not have been suffering in pain as we tried to recreate a medical record from memory and a fax machine. The next day I was sent back to the first hospital to get the record. In an hour and a half they printed out the entire EMR [electronic medical record.] I gave it to Fred’s new doctors. They looked at it then gave it back to me. They said it was safest with me. Fred might go to many facilities but if I kept it his record would follow him. I spent the next six hours organizing and reading Fred’s record. I found so many mistakes. If I could have read the record on a daily basis his care would have been so much better.
Each night on Facebook I posted the tragedy of our life. After receiving advice from Christine Kraft, I began to use Twitter. I did this very scary thing to find one man: e-Patient Dave. He was a well known e-patient and a kidney cancer survivor. Within minutes of my tweet we were in contact. We emailed back and forth that night. Then he called. By 10:00 that evening I was talking to Dave’s physician about my husband’s cancer care. I told him about Fred’s current status and my research and concerns. His quiet calm support helped me to face what was becoming very evident in my mind: it was too late for Fred. His current oncologist was doing everything that could be done in Fred’s advanced state of disease.
During all of this confusing and frantic time we were using technology in a different way. We were using it to wrap up the loose ends of a career and a life. When Fred was first admitted he could still stand and walk some. There was a computer room at the end of the hall. If he could walk down that hall Fred could spend a few agonizing minutes surfing the web. He would post to friends and be himself in 12pt font. Soon he could not do that. Fred was a professor of film studies. When he was diagnosed he was still teaching classes. We spent some days getting his class grades compiled. As he was reading one paper, he turned to me and said, “Reggie, try typing a line of this paper onto Google and see what comes up.” I went to the computer room. It was plagiarized. Fred missed the access to the internet and the freedoms it entailed. I got our old laptop refitted for WiFi. Fred was so happy. But within weeks we were transferred to rehab and hospice where no WiFi was available. Pain can be treated in many ways, with fentanyl, lidocain, and PCA Pumps. But one of the best sources of pain relief for Fred was the internet: access to sites such as Facebook, IMDB and Ain’t it Cool News. So nightly, I would come home and call Fred and log on. I would read him all of his email and post his status. And then we would say goodnight.
On April 29th 2009, I sent out an email blast to everyone I knew. I was appalled at the care patients receive: the lack of access to data and the lack of coordination of care. I had worked retail since the early 1990’s. Who has heard of a decent-sized store that doesn’t have a POS system? What business provides service without an itemized receipt? And I have yet to find a store that charges the customer for their copy of that receipt. I had been a special education advocate for my son since kindergarten. . . . But in my role as caregiver and patient advocate, I was told by medical records personnel if I wanted a copy of Fred’s medical record I would have to pay 73 cents a page and wait 21 days. How can a patient or care-giver be part of the team if they have no access to that data? In my email blast I spoke of all those families and patients who suffer in silence. I would speak for them. I would paint medical advocacy murals on the walls of Washington, DC.
While Fred was in Hospice care, I placed the first mural. The Medical Facts mural as a re-visioning of the face sheet mimicking in style and clarity the nutrition fact label: all important, vital statistics are present with norms for comparison. How do you know your blood pressure is high or your hemoglobin low if you do not know what normal is? Where are the bone mets and the soft tissue mets? Where could you harm this patient just by touching him? Fred was injured twice by techs moving his body who had no idea of the extent of his disease. I asked a nurse, “Who reads the medical record?” Her response was “We read the face sheet and maybe the most recent pages.”
In early June, sitting at Fred’ side, I began drawing the design sketch for the next mural: 73 Cents. This would be a cross between Guernica and Death of Marat with a little Diego Rivera thrown in. This painting would depict our family’s struggle, imprisoned in a hospital where no one is communicating and data is stuck in an internal loop. The figures in this piece would be separated in darkness, and no one would be making eye contact within the frame.
On June 17 Fred died. I was his caregiver for his last six days. In home hospice I was in charge of the MAR that I fought so hard to get copies of in the different hospitals Fred had been in. I was the one who gave him his last meds at 7:30 AM. I helped the hospice nurse roll his body to clean him up for funeral transport, and in so doing, held his still warm body one last time. I hadn’t hugged Fred for two months at that point. It had hurt him too much to be hugged. Now I could hold Fred near and cause no pain.
On June 21 and June 22 I sent another mass email telling everyone I knew I was going do everything in my power to fix a medical system that keeps patients and families in the dark. I would post on Face Book. I would blog. I would Twitter. On June 23 I began painting 73 Cents. In the next two months the painting would receive worldwide press. It would be the subject of blog posts, tweets and the AOL Splash Page. It would make the cover of the BMJ [a medical journal formerly known as the British Medical Journal.] The world was talking about patients' rights and data access. This was caused in part by paint and social media. If using social media could get our message out to the world think of what could happen if the medical establishment and empowered patients embraced it.