Patient access to information, in whatever way it comes, is paramount to the success of care. It’s paramount to patient safety. I’ll give you an example.
My future mother-in-law fell at home and I, as a patient advocate, gather up her information, gather up her medications, and head to the hospital. Cool, we think everything’s going well.
We get to the hospital and we started a series of data misinformation. That misinformation included not having the ability to take her medication list and put that into the to the medication history, except as a blob from a PDF. It included having information at the point of care that was not current. A cast cart came into the room and yet the nurse didn’t know results were in, lifted my future mother-in-law up had her stand the at cast cart. She had a broken leg. It continued to have misinformation and misinformation. Patient access to the medical records saved her life. She was discharged from the hospital, presented to a long-term care facility.
My fiancé then went to the long-term care facility and noticed that she was still wearing her temporary cast. He asked to look at the record. They said, “You don’t get to you look at the record” and he said, “Wait a minute!” You’re a meaningful user. I have the right. I have a power of attorney. I want to see the record.” He was told, “You won’t understand it.”
He looked at the record. He discovered a lot of things he didn’t understand but what he did understand is no doctor had ever looked at her from the emergency room and her two day stay at the hospital. The cast was on the wrong foot and it was a temporary cast and she’d been walking on it for four days. So, she’d been walking on the broken leg and her good leg was in a temporary cast.
I then called the hospital. We had an ambulance take her from the long-term post-acute care facility to the hospital. She had very, very high anxiety levels and her white blood count was not good and she had some enzyme levels that were too high.
Well guess what! No one did a query to see where information was about her. There was no mechanism to send an email and say, “Do you know anything about this particular patient”, and so the provider then decided that with this level of anxiety, with no other symptoms, they would do a cardiac catherization. It was a completely unnecessary task but the doctor on call was a cardiac surgeon and so that’s what he did. So, she ended up having a cardiac cath.
I was in Washington DC I called and I said, “Look, I need to see the record too - I’m here with a bunch of doctors, we’re going to check it out”, to the point where the doctors looked at the record with me because I did have access through the law, and we determined that most of this care was completely either wrong or unnecessary.
I called back and I said “Guys just have them wash their hands! We are that fundamentally at disconnect. Misinformation all the way around. Just make everyone wash their hands”, because she now had an open wound.
She was discharged back to long-term post-acute care. She never recovered.
She actually died in long-term post-acute care for an injury that should have had her home in three days, if the cast was on the right foot, and they hadn’t done the cardiac catherization.
So why get involved in interoperability? Every one of us have had a story about how they themselves or their family member was not getting appropriate care because the information was not available. The information was not correct. It was not timely.
So why do I believe in DirectTrust? I believe that a trusted framework that includes the patient means that all of us can co-produce health in the ways that the patients prefer. That’s why.