If you want to meet the future faster, go out to the edges of your field of vision. Find out what pioneers and rebels are doing and learn from them.
Sometimes that means taking a virtual helicopter ride up to the zenith of tech development, as I did recently, watching Dario Gil, SVP and Director of IBM Research, present a journey into the company’s famous research labs.
I was struck by a story shared by Maja Vukovich, an IBM Fellow who specializes in artificial intelligence (AI). She described a client facing a nightmare problem: How to update a mission-critical application that had ballooned over decades and been written by multiple development teams, some of whom left no documentation when they left the company. As she said, “We as humans are not built to go and look through 1.5 million lines of code and understand what business functions are buried in there.” IBM built an AI model that was able to comb through the code, identify obsolete and redundant functions, as well as gaps, and even create groups of code to take advantage of new cloud capabilities. Imagine how that might be applied to the kludgy code we so often see in legacy health care systems.
IBM has also launched Project CodeNet, depositing 14 million code samples written in over 50 programming languages on Github. It’s an open source development bonanza.
Switching gears, where might you find rebels who push and bend tools until they break? Their explorations yield different reports about the future of technology.
In health care, that describes people living with life-changing conditions and those living with disability. They are likely to experiment – with tools, data, and treatments – and to adapt medical and assistive devices. The more we engage these innovators as partners, the faster we will discover new paths forward.
But how? Focus groups and survey research fall short when tracking outliers. Better to meet people where they are and listen instead of asking them to respond to your questions.
For example, the diabetes online community (aka the “DOC”) is a vibrant source of innovative suggestions for technology developers, policymakers, payers, and clinicians. A rallying cry of “we are not waiting” launched a movement that demands access to health data, improved design and usability of apps and devices, and real progress toward better lives (starting with a better night’s sleep).
A DOC rebel alliance gathered first online and then in person, at a conference convened by DiabetesMine, a blog and community started by patient advocate Amy Tenderich. It was a catalytic moment to have that many diabetes hackers and pioneers in one room, naming the problems and formulating solutions. How might we tap into the reservoir of energy and innovation that is currently dammed up in other patient and caregiver groups? How might we recreate that spirit of possibility?
Prize competitions are one catalyst for gathering need-knowers and problem-solvers. By focusing people’s attention on a specific challenge, organizations can recruit people to their cause and give fuel to new entrants to a field.
For example, KidneyX is a partnership between the U.S. Department of Health and Human Services (HHS) and the American Society of Nephrology to spark innovation in the prevention and treatment of kidney diseases. KidneyX has fielded a series of prize competitions to redesign dialysis, accelerate artificial kidney development, and improve patients’ quality of life. Most recently, they focused on how to reduce the transmission of coronavirus in clinical settings. As Ben Eloff, Ph.D., HHS Director of Innovation Management, writes, “By designing this prize challenge to directly solicit solutions from people at the ground level, we not only involved them in the research process, we gained better understanding of challenges that are being faced in everyday care centers.”
I believe we will see more inventions emerging from unexpected quarters as access to state-of-the-art “hard tech” increases, manufacturing tools are democratized, and the tools of scientific discovery become cheaper. It won’t just be corporations and rebels who invent the future, but everyone who has a problem to solve. And who doesn’t have at least one knot they would like to unravel?
The internet and new technology capabilities allow us to connect with each other to share code, data, and designs. Let’s create opportunities for partnerships among all the stakeholders. The more we open access to the information, data, and tools that people need to solve problems, the better.
Image: “Stars” by Paul van de Velde on Flickr. Dandelions are hardy pioneers. Every seed is a tiny flower with potential.
Barbara Figge fox says
What are healthcare parallels to programmers who do not document their code? What are parallels to the loss of knowledge represented by their heedlessness (or carelessness)?
One possibility: Families of patients who die (or do not flourish) due to medical failures that could have been documented for future improvement? Either the family members don’t notice or they don’t know about the mistake. Or in grief – or disgust – they ‘wash their hands of it’ and ignore the potential value of a follow-up response.
I could have made noise — on Twitter, at least — about the advisability of giving immunotherapy in a clinical trial to a patient (my husband) who was already quite ill. But I didn’t. I washed my hands of it. Hopefully his data is recorded, somewhere, in the clinical trial records, so that it can influence future decisions.
Susannah Fox says
Thank you! Such a salient comment.
I’ve learned from my community colleague @ALSadvocacy about the loss of knowledge not shared across research silos. Or the asking and re-asking of similar questions. How might we heal this aspect of health care?
(Note: the person behind the Twitter handle and blog choose to cloak their name, so I’ll not use it here.)
Dave deBronkart says
So so true. It occurs to me that pervasively, highly educated people work in a culture that values creating something new, not fortifying what already exists as shaky pudding. This is a real design flaw in our system that thinks it values knowing things.
I remember my shock around 2012 when I learned that most published research is never replicated by another team. I remember further shock at then learning that there’s no way in pubmed or Google Scholar to filter results by whether a study has been so confirmed.
I remember further shock at learning that the primary reason for this weakness is that the NIH, which disburses much of the funding for research, does not attach any value at all to this issue. They would literally rather fund more shaky pudding than fortify what they already funded.
This is of course a very different domain from creating sustainable / maintainable code but I think there’s a parallel: “new” is more interesting than contribution to a better life for a community.
Susannah Fox says
Thanks, Dave! Great points and an unforgettable image of “shaky pudding.”
Joyce Lee shared a link on Twitter yesterday to a wonderful 2016 talk by Harvard Medical School Assistant Professor and CEO of Cyft, Dr. Leonard D’Avolio. It was his keynote address to the HIMSS Big Data and Analytics 2016 Conference in Boston:
Hype and Disappointment on the Road to Healthcare’s Promised Land
I couldn’t resist watching his similar but even more personal talk about how health care’s shaky pudding paradigm affected him and his family:
Sobering, inspiring stuff!
Dave deBronkart says
From that video, right off the bat:
“I did what any loved on would do – what every loved one is forced to do – when faced with a serious illness: I gathered as much information as I could, as quickly as possible…”
Let this be heard, again and again, by every doctor who tells us to stay off the internet.
For years we in the movement were somewhat consoled by knowing that paternalistic docs were aging out of the population. But I’ve recently been so disappointed to learn that increasingly, BRAND NEW docs are telling patients to stop googling, because (I’ve been told) they’re TRAINED and mentored that patient questions interfere with the budgeted time allotment for each visit.
But we have drifted off the course. The very next thing he says:
“What you realize when you try to gather the information required to make these decisions is that despite the fact that a lot of research has been done, it doesn’t necessarily answer the questions that you need answered to keep the people that you love healthy.”
And that’s where peer-to-peer healthcare can save the day, because unlike the researchers, we other patients HAVE been through it and know what we need to know.
Susannah Fox says
Yes! Peer health communities can fill in gaps left by traditional care teams. Like a “just-in-time someone-like-you” who can give you their perspective on treatments, on coping with life with a certain condition or side effects, etc. Or a whole community of people who have done all the reading and are happy to share their notes with newcomers.
What I hoped to inspire by writing this post is an understanding that we need both the “hard tech” that companies like IBM are developing AND the “soft tech” that peer communities create. Thanks for seeing my points and helping to amplify!
Dave deBronkart says
I’m going to make this a central point of my keynote tomorrow at #MayoSHSMD. It’s about what hospital social media people can learn from the Long COVID community.
I bit on the esoteric side, but this is a professional audience…
Chris Lavrich says
Love this article! I had a colleague that is living and enjoying the looping hacks to the insulin pump. I think that contents are a great way to get people to start to tackle the problems together.
I’m still waiting for one of the dominators (Apple, Google, Amazon) to drop something incredible into healthcare. I think they’ve dipped their toes, but we haven’t seen anything too crazy from them yet.