In 2008, I swore I would never own a cell phone.
I saw no point in them. If someone needed to reach me. they could call me at work or at home. If I needed to find a phone number, I would look in the phone book. If I needed to take a picture, I had a Kodak camera.
Then Fred became ill.
Then I could not work and I rarely went home. Then I would try to coordinate cancer care and childcare from the corded phone in my husband's hospital room and find it an impossible task. I bought my first cell phone and began to learn the power of mobile technology.
After Fred died, I began to work as a patient advocate, As I spent days away from home without computer access. As I learned more about twitter and saw the potential power of the conference hashtag in supporting patient rights, I upgraded from a cell phone to a smart phone.
Now, I use mobile devices constantly for communication, support and research. My phone is my flashlight, my camera, my computer, my calendar, my calculator. It is even my alarm clock.
So when I heard HHS was doing a Mobile roundtable I thought I must go. I live in DC, so I often attend meetings to fulfill my duty and mission to promote patient centered care. I have attended many roundtable talks. Most often these events are not conducted in the round either in physical design or in in a sense of well-rounded intellectual variety.
I have attended many events at HHS and some were almost magical in their appreciation and inclusion of the patient voice in Health Information Technology. On March 16th I attended the Mobile Devices Round Table at HHS. I attended as a member of the press since I blog a great deal on topics as they apply to HIT.
This meeting was not magical, although it had some memorable moments. As a matter of fact, it reminded me a a nursery rhyme that always puzzled me as a child.
"Mother may I go out for a swim?
Yes, my darling daughter,
hang your clothes on yonder branch,
but don't go near the water." -Best Loved Nursery Rhymes
You see, it was a roundtable on Mobile Devices Real World Usage and Real World Privacy and not one patient was presenting from the dais.
The day began on a high note with an enthusiastic welcome by Farzad Mostashari, MD National Coordinator for Health Information Technology. He managed in ten minutes to speak about prevalence of mobile adoption. It is a tool of the masses, embraced by the soccer mom, retail clerk, ivy league scholar and the homeless men in the park down the street from my apartment. It is ubiquitous. He also addressed privacy concerns as health professionals begin accessing patient information using mobile devices, but he did it in an even-handed manner that was more hopeful than concerned.
But then the first panel began and the audience settled into a warm stupor of being talked at rather than taking part in the conversation. Joy Pritts, JD, Privacy Chief at ONC was the moderator. All audience questions were submitted on paper cards and vetted. This panel focused on oversight and and it was quite the alphabet soup of governmental representatives. Tim Grance from NIST, Cora Tung Han from the FTC, Geraldine Matise from the FCC, Susan McAndrew from the OCR and Bakul Patel from the FDA spoke at length about device oversight using their various systems of government. Cora shared some of the more memorable examples of fraud in app design highlighting their action against an app said to treat acne using the glowing light of the cell phone.
The next panel was moderated by the amazing Jon White from AHRQ. He was understated and hilarious. He managed to reference Monty Python and Saturday Night Live while questioning the panel. I laughed out loud while those around me looked up in confused silence. This panel was focused on the real world usage of the healthcare provider. The panel consisted of Jacob DeLaRosa, MD from Portneuf Medical Center, Steven Jeff Heilman, MD from Norton Healthcare, Meri Shaffer, RN from Montefiore Home Care, Lisa A. Gallager from HIMSS and Christopher H. Tashjian, MD from River Falls,Ellsworthh and Spring Valley Medical Clinics.
Christopher Tashjian was amazing. He spoke frequently from the patient view. He used real world examples of mobile device usage with cloud based EMR providers. He made clear how easy it was to access his files remotely. He may be practicing in Wisconsin and his patient data remotely stored in Kansas City with Cerner, but in his practice it is only a few finger swipes away. At on point he even stated, "I want my records, no let's be honest, it is the patient's record."
(I did do a little cheer at that statement to consternation of my fellow press members.)
Then it was break. I looked at the time on my phone, as I have stopped wearing a watch. I should probably head back early to my paint brushes and my writing. Before leaving I went over to Joy Pritts from ONC. I told her I was disappointed no patients had been included in this event. She told me there was going to be national focus groups working on that. "Oh, will those be open to the public?" She asked in return if I understood how focus groups work. I responded I was pretty sure I did, so what then were they doing that involved the patient viewpoint on mobile devices in the public arena?
Joy looked at her staff. The staffer responded that probably Lygeia Ricciardi was working on that. She could introduce me. I told her not to worry, I knew Lygeia well and turned to go.
It wasn't hard to pack up my gear I wasn't allowed to paint at this event. I gathered my Ipad and smart phone and thought about what was missing this day. It was missing a soul. It was missing the heartfelt reality that a patient brings to the table. I had spent the last two hours hearing about easing provider labor and app fraud, while I was yearning to hear from the man who triaged himself in Haiti using a first aid app
or the first responder in Kansas city who can pull up a patient EMR in the field due to the adoption of the Cerner Smart Card.
I wanted to learn about real world usage mobile devices, and I wanted to see how privacy is valued by patients when their life hangs in the balance.
Perhaps some day I will.