Sorry Business

       “The truth comes out of this hairbrush.” – Dula Nurruwuthun

If I could, I’d create a pole so high
it would pierce the sky, and still
would not be as tall
as you walked in this life.
I would summon truth
from my brush made of hair
to tell of your life’s essence;
the white of your pure intellect,
the green of your calming garden,
the red of your fierce heart.
It would whisper
the rose-gold of a Perth sunrise,
sigh the blue of deep absence
and my tribute would shimmer like tears
to keep your spirit company
until the weary wood lies down,
the colors fade like daylight
to velvet night,
and I am left with
this sorriest of business.

-for Rachel Cheetham Moro, 1971-2012

On the islands north of Australia, the mourning period is known as sorry business. Some funerals include carved personal totems with designs applied by brushes made of human hair.
~ from an exhibit at the Seattle Art Museum

© 2012 Jackie Fox

Published in Issue 11 of Touch: The Journal of Healing

A Meeting of the Minds

The above tweets are from the “Healthcare; Education; Research: Evolution or Revolution?” translational health sciences colloquium held at the Lodge at Torrey Pines on Thursday. It was my great honor to live-tweet the conference on behalf of my employer, HDR Architecture, which cohosted the event along with Eric Topol, MD, director of the Scripps Translational Science Institute and author of The Creative Destruction of Medicine; Michael Johns, MD, chancellor and EVP for health affairs, emeritus, Emory University and co-author of Predictive Health, and Bill Brody, MD, PhD, president, the Salk Institute for Biological Studies.

In addition to Drs. Topol, Johns, and Brody, the line-up was a Who’s Who of thought leadership in medicine. Dr. Nancy Snyderman, NBC’s chief medical editor, spoke on media’s responsibility to translate complex medical information without talking down to the audience, using her recent Rock Center interview with Dr. Topol as an example.

Denis Cortese, MD, president/CEO emeritus of the Mayo Clinic and director of Arizona State University’s Healthcare Delivery and Policy Program, shed light on the problems we face trying to move our healthcare system to a more preventive model. He said Medicare “pays to keep us sick;” among other ways, by not reimbursing  care provided by nurse practitioners. Another problem is the lack of interoperability among electronic medical records systems, a requirement doctors recommended while meaningful use requirements were being created, but was removed.

That’s when I started wishing our colloquium had been made mandatory attendance for members of Congress. I wished it again when a spirited discussion took place on randomized clinical trials. They take too long to develop,17 years on average; they cost too much to develop, $80,000 per person; but as one attendee pointed out, it’s the best we have right now. The debate was both respectful and ferociously intelligent, where so much of what passes for debate in our political arena is just ferocious.

Dr. Topol likened the digital medical revolution to Gutenberg’s printing press in the way each of them democratizes knowledge. He told us about a $99 device he uses to monitor his sleep patterns, compared to a $3,000 lab test. He jokingly added that all the price points seem to be $99, and Anne Wojcicki, founder of genetic testing company 23andMe got a laugh later when she said they had just reduced their DNA analysis product to that exact price point.

Dr. Topol also showed us his genome, which he keeps on his iPad using an app called My Genome. At that point I felt like I had wandered into a Ray Bradbury novel. I will own up to some fear about what this brave new world of technology will do to the doctor-patient relationship, but Dr. Topol makes it seem like common sense. As he pointed out, we have sensors on our cars but not our bodies, and which one is more important? I took more hope later when Dr. Snyderman said the technology-based change in doctors’ roles may “free us to focus on our role as healers.”

Process was a large part of the discussion. Dr. Garry Neil, representing the cross-industry pharma group TransCeleration, talked about how in the current clinical trial system, four pharma companies will send someone to the same investigational site. The industry, which spends $34 billion a year on clinical trials compared to $1.8 billion for the National Institutes of Health, is working on ways to collaborate and streamline the clinical trial process.

Elias Zerhouni, MD, former director of the National Institutes of Health and president of global R&D for Sanofi, said we are putting young doctors and researchers under so much pressure to provide service they don’t have time to ask the right questions. He said “Nature is trying to tell us something” when cancer’s pathways include 270 brakes and 30 accelerators (oncogenes). Yet we are focused on what speeds it up, not what stops it.

In case you are wondering where patients were in all this discussion, wonder no more. Dr. Cortese said the only stakeholder in all of this is the patient; yet the patient is the one missing from the stakeholder meetings and conferences. Putting the patient at the center was a common thread. Every time someone talked about how patients must be at the core of future models, I kept wishing my #bcsm buddies and other patient advocates could be there. Every one of these doctors did their profession proud.

Speaking of which, I was very proud to be my employer’s social media reporter for this event. HDR Architecture is to healthcare and science/technology design what these doctors are to medicine and healthcare policy. Technically, I don’t even work for the architecture company; I work for the parent corporation HDR, Inc. But as a breast cancer survivor and past, current and future patient, I have always taken immense pride in the work of our architecture teams. One of the presenters was Dr. Joanne Smith, head of the Rehabilitation Institute of Chicago. Teamed with Gensler, we are designing a facility that not only will put RIC researchers in close contact with clinicians, it will put them in close contact with patients. This is nothing short of a revolution.

I could go on, but this post is already twice as long as what I typically write. We used the hashtag #ResearchtoLife if you want to look up more of our tweets, including quotes from the rest of our stellar line-up not mentioned here. We’re also planning a Storify summary but in the meantime, you might want to check out the story by TenderDaily.