Spreading The Word Or Preaching To The Choir? 5

The following blog post is by Mark Delong.

Mark DeLong leads the information technology group at Duke University’s Institute for Genome Sciences & Policy. He is particularly interested in harmonizing life sciences research processes with information technology and in emerging computation technologies including specialized computer processors, “cloud” computing, high performance computing, and development of high-throughput analysis systems. He and his group strongly advocate use of open source and open data. He studied philosophy as an undergraduate, and earned his PhD from Duke in English medieval and Renaissance literature and culture.

The opinions expressed by Mark are his own, and do not necessarily reflect those of the Lilly COI Team.

SPREADING THE WORD OR PREACHING TO THE CHOIR?

On Saturday evening after the third Sage Congress broke up, I wandered down to the Hyatt’s restaurant to mix with other stragglers and relax a bit. I met Jerry Matczak and Tom Krohn from Lilly Clinical Open Innovation, who had the same thing in mind.

“What did you think?” Tom asked, prodding me for a judgment of the event.

I had been wondering exactly what I thought ever since we wrapped things up that afternoon, and I paused and said, “I think it felt a little like a revival.”

I live near Rougemont, North Carolina, a hamlet where the road widens a bit as you travel from Durham north toward the Virginia state line. It’s where the more cosmopolitan Research Triangle fades into the North Carolina Piedmont and dissolves into what some know as The Real North Carolina. In and around Rougemont every summer – and, for that matter, all across the Bible Belt – churches get spruced up, some places still raise tents, and the Born Again converge in “revivals.” They are occasions for renewal and rebirth, as the name suggests. The revival meeting itself has a flow: witness, prayer, commitment. And you can expect that everyone in the tent knows the creed, though the commitment thing – essentially the core and destination of revival – is where the wavering takes place.

In Rougemont, as in other communities, those attending revival meetings know each other. They are fluent in all the points of faith – brothers and sisters in spirit even though their wills may be weak. At the Sage Congress – my first, by the way – I detected a similar consensus of thought, though I think it would be fairer to describe that consensus as a cloud rather than a creed. The congress brought together a wide array of participants spanning non-profit and for-profit worlds from universities, research organizations, foundations, advocacy groups, pharmaceuticals, government, health care businesses, publishing, biotechnology startups, among others.

The Congress certainly had an illustrious roster of those bearing witness: George Church, David Haussler, and Lawrence Lessig to name a few of the keynoters. (The excellent presentations are linked on the Congress agenda.) But Jamie Heywood, co-founder of PatientsLikeMe (a for-profit, by the way), probably came closest to defining the predominant participant stance – the cloud of belief in the hall: The Congress

  • values the shared more than the private,
  • treats people as partners rather than as “subjects,”
  • emphasizes access more than buttoned-down security,
  • embraces the process of learning more than the stasis of the validated, and
  • upholds personalized approaches over aggregated ones.

Of course, individual’s attitudes and leanings likely diverge a bit.

But put such divergences aside. The group at the Sage Congress was quite homogenous in another – and I think quite important – respect: each individual was quite well connected, and especially with others in the hall at the Hyatt. This connectedness is indeed useful, so long as it extends into the communities that don’t share the Congress’ general sensibilities. But I’m not sure that’s the case. Few  people attending the Congress seemed, to me at least, much more than a degree or two separated (see, for delight and a little bit of illustration, The Oracle of Bacon  and the Erdős Number Project). The danger, of course, is that though the Congress experience affirms and everyone feels reassured in their views, in the end, people leave as they came. And when they leave, the connections have only widened among those who were already Born Again. A revival seeks increase of those Born Again; the Sage Congress should seek to convert attitudes and practices Out There, beyond the tent.

And so, on Saturday evening in the Hyatt’s restaurant, I asked myself, “Could the Sage Congress be a revival meeting where only the converted are invited and show up? When the call to commit comes, what does a conversion look like? Or is conversion a precondition?”

I’ve returned to my own bed in Rougemont, and it is good. I’ve returned to my work at Duke, and it, too, is good, mostly. Like the rest of the participants, I left the hall back in San Francisco and have gone back to an institution that some in the Congress might label as part of the problem, not the solution. Even the nebulous creed of the Congress misaligns with many participants’ everyday professional lives, sometimes quite dramatically. How do I move from an admiration of John Wilbanks’  work on Portable Legal Consent toward getting it used and helping it influence consents at Duke? Or, how do we move established institutions like universities and pharmaceutical companies closer to a view of “openness as infrastructure”?

This tension of creed and reality seems to have played out in the Congress’ proceedings, mainly, I guess, by alternate examples. The most compelling contributions came from people who had moved beyond “traditional” institutions and created new and nimbler organizations. Kathy Giusti, for example, established the Multiple Myeloma Research Foundation and the Multiple Myeloma Research Consortium, where the principles of the Congress can be made real (at least in some form). Her talks at “Congress Unplugged” and in the regular sessions were riveting. Jamie Heywood founded the ALS Therapy Development Institute and, later, co-founded PatientsLikeMe. (A side note: these organizations count rapidity and speed as great virtues, as does probably every other organization featured in the Congress. That’s not very frequently a hallmark of larger and more ponderous institutions.)

Now, a few days after Congress adjourned, I am trying to figure out how the principles of the Sage Congress “translate” into a large academic research institution, how the Congress’ revival might bring something to life in this Here and this Now.

I lean into conflicts and tensions made manifest by a new and likely better way forward contrasted with the ways of institutions with long histories and attitudes drawn from that experience. I hope that a future Congress might wrestle with frictions between emerging hopes and entrenched practices.

A hymn that became part of Billy Graham’s “alter calls” includes the words

Just as I am –  though toss’d about
With many a conflict, many a doubt,
Fightings and fears within, without,
–  O Lamb of God, I come!

Conflict, doubt, fightings and fears of a less religious nature “toss about” many people in health care and biomedical research – thoughtful people who want to move forth in their own institutions. The Sage Congress has a vision that needs a home in places with long histories of research and achievement – places like academic research institutions and university hospitals. Places that especially could respond to a revival.

5 comments

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  2. My first reaction to this was that The Congress had managed to finesse the concept of agility from its current scope in project management to an entire industry–the “new and nimbler” reference with regard to Kathy Giusti, for example, and the overall similarity between The Congress agenda and the Agile Manifesto. The more people are treated as if they were metaphors for disease symptoms, business opportunities, or career advancement for someone else, the less likely they are to “align with the professional life” of the researcher. Or of the people making a living from the research.

    One pharmacist I knew would not fill prescriptions for brand-label drugs because “the generics work just as well in the human gut.” I used to work at SmithKline French Labs, where the pharmacokinetics dept would discuss Murphy’s Law: under the most tightly controlled conditions, the research subjects will do just as they please. They knew that the human gut isn’t a stainless steel environment.

    It transpired that the profit margin of the generic drug was so much higher for the pharmacy that an active practice evolved discouraging patients from using newer drugs.

    In the case of one patient of my own doctor’s, that conviction put someone in the hospital because they didn’t respond to the generic the same way that they responded to the brand-label.

    There’s more than simple lab chemistry here.

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