Information, knowledge and wisdom

@tedvickey posted this great quote today:

We’re already overwhelmed with data. What we need is information, knowledge and wisdom.
- Dr. John Halamka, CIO of Beth Israel

 

Halamka gets to the heart of what challenges so many of the health apps currently available to consumers. They collect a lot of data. Sometimes, they make pretty dashboards with that data. But what is consistently missing is the knowledge and wisdom of what that data means, what can be done with it and how.

That’s what scientific experts bring to the table. Our years of training and experience are exactly about how to take all that data (believe me, we collect insane amounts of it in every study) and use it to improve – to make weight loss programs better, to improve the feedback that program participants get, to IMPROVE OUTCOMES.

There are a lot of apps that have been created by some smart teams. Many of them have brilliant programmers. But most of them have never run a behavior change program. They haven’t piloted a new approach and had it deliver unprecedented results (or had it bomb terribly – an equally valuable learning experience).

Yes, those folks can go to PubMed and read all about the research that my colleagues and I have spent decades doing. If they’re lucky, they can find a stellar systematic review and meta-analysis that sums it all up in under 4,000 words. But doing isn’t reading. I can read every Berkshire Hathaway Annual Report, but that doesn’t make me the Oracle of Omaha and I can’t imagine someone suggesting to you that taking investment advice from me is a sound financial decision.  So why are we putting our health data and the opportunities it provides for information, knowledge and wisdom in the hands of amateurs?

Lean Academia

I’ve been taking time away from the lab each day for the past few weeks to learn web application development. I’ll post more about the what and why another time.  This week the connection between my program and my lab work came together in another way.

I’m enrolled in class at Starter School (formerly called The Starter League and Code Academy), which sits with-in 1871, Chicago’s premiere start-up incubator and co-work space. Starter School is a 9-month program that teaches the coding, design and entrepreneurship to build software and start companies. (If you want to learn more about what makes this program unique and awesome, check out this WSJ article and the interview with my classmate Chance).  I’m only enrolled in the first 3 months which focuses on coding and programming.  We do start diving into entrepreneurship and it has been an eye opening experience for me.

Our starting point in those classes was The Lean Start-up by Eric Ries and the How to Build a Startup series on Udacity with Steve Blank.  I wish everyone in academic research would watch Blank’s first lesson (which is done in three videos).  I see a number of parallels to academia worth that I’ve been noodling based only on my teaser introduction to the world of Lean Start-ups.

“Start-ups are not small version of big companies.”  The labs of our senior established faculty (the people with endowed chairs who have four R01s (or used to) at a time) seem like big companies.  They have well established systems for moving their research forward. Processes that they’ve built over years, staff that execute details. But the lab of a newly hired assistant professor can’t operate like a smaller version of that.  I don’t think it should.  In the current funding climate, I think allowing (and encouraging) junior faculty to act and think more like start-ups would increase their likelihood of success and increase their ability to innovate.

In recent years, people within and outside the research community have criticized our grant review process as not really promoting the kinds of innovations and leaps we need to truly tackle our goals (as a cancer researcher, these are often written and framed within our failure to “win the war on cancer”). These commentaries assert that we don’t make the kinds of leaps we hope to make, but instead make small incremental advances in our science.  I’ve heard time and again from my peers about the great novel idea they had that got a response of “No one will fund YOU to do that. You’re too unproven” in some form or another from mentors or peer reviewers. These faculty are like entrepreneurs – they have hypotheses about what will work and they need to test them (in academia, we call this getting pilot data). The problem is that we tend to be resistant to pivoting when the pilot data doesn’t play out.  Our resources are so limited that the pilot data is too often seen as a means of showing we can do “anything” rather than “this thing”. Hypothesis testing in the lean start-up is expected to lead to lots of hypothesis rejection or modification until the hypotheses left to test are so low risk (e.g., should the logo be Pantone 165 or 166?) that spending time and money to test them may not be necessary to launch.

Lean start up also aligns nicely with the calls from some of our best scientists to think about alternatives to the randomized clinical trial.  Randomized trials are expensive and time consuming and not conducive to early data that suggests the intervention/product won’t work in the “real world.”  When data to reject “real world applicability” comes to a lean start-up, it MUST re-evaluate the path.  But a junior faculty member trying to build a lab doesn’t have the ability to pivot a randomized trial or it might be the last one she’s funded to run.  She needs to deliver the study she was funded to.  A greater flexibility in the study designs we let drive our decision making would benefit our field.  We would also benefit from giving our faculty and their NIH program officers more flexibility to adapt and make changes mid-study.

Opening academia up to new approaches to building a research program/lab and new ways of thinking seems at least worth contemplating given our tight funding climate. I’d love to hear others’ thoughts on this!

Science and Policy

There are some great books and blogs out there making compelling cases for scientists to get more engaged in policy.  Changes in elected officials lead to changes in committee representation (not just leadership, but also membership) that has the potential to shape scientific and health policy.  PandoDaily has a nice round-up of the changes on the House Committee on Science, Space and Technology that might result from the election.

Men’s Health Week

After a two week vacation from this blog and my twitter account (only half of which was because I was actually on vacation!), I came back today with a guest post over at AICR.  Hop over and join the conversation about what cancer screening strategies are available for prevention.

Home economics is health economics: Why we need to keep home ec

I read a great tweet last week noting that healthy foods are NOT more expensive than unhealthy foods, but they take time and practice to make tasty. It got me thinking about why, first as a struggling graduate student and, now as a working parent, I have always been committed to cooking healthy dinners.

I think a big part of it is that I grew up this way and I learned how to do it from an early age.  My grandmother was a home economics teacher in a small rural town, married to a dairy farmer.  Money was tight and so was time.  My grandmother planned the menu for the week every week. That meant she only bought what she needed at the store and she didn’t have to figure out what to make when she got home.  I remember the menu (& running grocery list of items she’d run out of) being posted on her fridge long after she’d retired and my grandfather sold his cows.  When my mom and her sister got old enough (and at an age far younger than we seem to put them to the task these days), dinner preparation fell to them.  They knew exactly what they needed to do, because it was all laid out for them.  They’d also both grown up in the kitchen, watching and learning.  I have no doubt this is why both are such great cooks now.  I dare anyone to roast a more perfect turkey than my mom or make a better pecan pie than my aunt. This approach wasn’t highly unusual for my grandmother’s generation.  My Dad’s mom knew what she was cooking for the week too!

Growing up, my mom did the same thing as my grandmother.  That meant as a kid I remember, she too came home from a long day of work, got our whole family fed a nutritious tasty meal and then went off to graduate school classes (yes, she WAS super mom!).  My mom took me grocery shopping with her.  I learned how to read nutrition labels to figure our how many grams of sugar were in each and I could pick any cereal with 6 grams or less.  I learned how to balance a checkbook from her after watching her write the check each week.

When I got to junior high, I took home economics and shop (though we called it something funny, like technology, though the most technologically advanced thing in the room was the VCR brought in on days when we had a substitute).  We learned to read a recipe, cook and sew in home economics (things I already knew but many of my classmates did not).  But menu planning wasn’t part of home ec, nor was budgeting.  Nutrition was, sort-of, part of health and banking was, sort-of, part of social studies.  I guess because we were all expected to go to college, we somehow didn’t need to know how to manage a household?  My husband grew up halfway across the country.  He had a class called “Foods” where he learned to cook, but as with me, little else of what my grandmother’s home ec taught.

Many schools have long lost home ec – it was an early victim of budget cuts (though some have retained it and modified it to meet the times in just the ways I suggest). With obesity rates among kids sky rocketing, we need to think about the critical life skills kids need to learn.  Historically, home economics was exactly the transdisclipinary integrated applied course we talk about being novel in education: nutrition, economics, math, chemistry (what do you think baking is?), medicine.  And if you’re lucky, you end up with apple pie. What could sound better (or more American) than that? Just don’t cut PE to pay for it.

Women’s Cancers for Women’s Health Week

Today marks the start of National Women’s Health Week – a fantastic initiative that brings together all kinds of different groups around important issues for women, like physical activity and self-care!  I have the huge honor of guest blogging about women’s cancers over at the American Institute for Cancer Research (AICR) blog today.  AICR is the amazing group behind the reports on nutrition, physical activity and obesity and cancer.  The report, which undergoes continuous updating as new science emerges, is an incredibly comprehensive expert review of the science around food, exercise, weight and cancer.

Check it out the blog and the report!

What makes the “best” science?

In prevention, I’ve noticed something pretty predictable happens when a new study comes out noting the health harms of certain lifestyle factors (alcohol, obesity, and red meat intake are particularly prone to this) – the internet lights up with someone posting (and plenty of others linking) about why we can’t trust anything that comes out of observational studies.

I am not going to sit here and pretend that there aren’t limitations to observational studies – there are and I know them well – that’s what the foundation courses in epidemiology teach you – the limits of each study design.

But let’s be perfectly clear about something else, randomized trials aren’t perfect either.  They aren’t perfect when perfectly conducted and almost none are perfectly conducted.  They can’t be.  Randomized trials are done on people, who are imperfect.  So that means people don’t comply with randomization and they quit the study.

This isn’t news.  If we thought the (THE) randomized trial was perfect, we’d only do one.  So we wouldn’t have need for meta-analyses of randomized trials, which proliferate in the literature.

Randomized trials are subject to interpretation.  One need only to compare how the same set of studies can be interpreted quite differently by the thoracic surgeons  and gastroenterologists when each group issues treatment guidelines.

Does this mean randomized trials are no good?  Absolutely not! In fact I recently wrote a paper with my colleague Graham Colditz about the importance of intervention trials specifically in cancer survivors, though we also noted the limits to what such trials can show.

We need to remember that we can’t (and never will) base all of our health and medical decision making on trial data.  I will continue to trust in the value of parachutes, despite the alarming findings of this analysis of trial data from the esteemed British Medical Journal.

My colleagues at Cancer News In Context & Washington University School of Medicine have put together a nice graphic on the pros and cons of observational versus randomized trial data.  I think it is a nice summary of how BOTH study designs add value to our understanding of health.  Which one is “best” is VERY dependent on the specific question of interest!

The Weight of the Nation

Last night I attended a special screening of HBO’s The Weight of the Nation.  The event, co-hosted by the Consortium to Lower Obesity in Chicago Children (CLOCC), the Chicago Department of Public Health and Comcast demonstrated one of the key points in our Advancing Cancer Prevetnion paper – tackling these large problems is going to require us to come together across traditional disciplinary boundaries.  That doesn’t mean a geneticist and clinical psychologist collaborating.  It means media and science and policy and advocacy all in the same room saying, “ENOUGH.”

After airing part one of the documentary, the event had a panel featuring Dr. Donald Lloyd-Jones, chair of Preventive Medicine at Northwestern (where I had the privilege of completing my post doctoral fellowship, Adam Becker, the Executive Director of CLOCC and Dr. Bechara Choucair from the Chicago Department of Public Health.
The film was outstandingly done.  Because this is what I do for a living, there was very little I didn’t already know content wise in the documentary, but I still found it incredibly compelling.  The HBO filmmakers did a great job of mixing scientific facts, scientist-delivered content, testimonials from individuals and powerful visuals.  The list of scientists they engaged is outstanding.  Besides Dr. Lloyd-Jones, I found the segments with Thomas Frieden (Director of the CDC) and David Nathan (Director of the Diabetes Center at MGH) particularly compelling.  It was also a real treat, as a scientist, to hear Dr. Gerald Berenson talk about his amazing work with the Bogalusa Heart Study.  The Bogalusa Heart Study is the one that first showed us that the foundations of chronic disease start early – in this case, overweight and obese children show signs of heart disease as children!  I also think a huge thank you should go out to the individuals who went on camera and talked about their weight and health struggles.  I am excited to see the remaining segments in the documentary.
I also thoroughly enjoyed the panel and audience discussion.  A couple things stood out -
- everyone recognizes that these aren’t just health problems, they intersect with social and economic issues, particularly for our communities at greatest risk.
- there are a lot of people with incredible passion to do something about this in communities around the country, especially Chicago
- taking actions in other spaces has an impact on health.  The two that were discussed last night I think are worth mentioning.  (1) The biggest piece of legislation that will get voted on in the next year is the Farm Bill.  It has huge consequences on health because it provides enormous subsidies for corn and soybeans.  Kudos to Dr. Lloyd-Jones for urging the audience to talk to our legislators about the Farm Bill. (2) Crime is a major impediment to healthy living in our poor communities – it doesn’t just limit the ability to be active for our kids, but limits job opportunities (meaning longer commutes for parents) and the businesses that will come into those communities (making it harder to get healthy food options).
Here are my favorite quotes from the panel:
“Weight MAINTENANCE is the key to this problem” (Dr. Lloyd-Jones)
“Change is possible and powerful” (Dr. Christoffel from CLOCC)

Does participating in research benefit you?

I saw a post on Twitter recently from Jody (@jodyms), who was so excited to be able to participate in a cancer research trial.  And I was thrilled to see it.  There is a lot of bad information out there about research.  And, yes, there is still too much weak scientific research going on and we haven’t fully accounted for the unethical research practices of our past.  But here’s why we shouldn’t throw the baby out with the bath water.

There is lots of research out there that can help you.

I’m going to do something that may not be really popular, or good for my career, but let me explain how I’d talk to my mom and her friends about participating in research.  Let’s say one of the ladies in my mom’s yoga group, Barb, was approached about participating in a 6 month weight loss trial.  Women of her age and menopausal status are a popular demographic for these kinds of studies that promise 10% body weight loss (or more) in a fairly short time with an intense tightly controlled dietary regimen.  They’ll measure all kinds of physiologic changes.  And this kind of science is valuable – it might provide clues to what happens in the body when weight changes – helping us better understand why weight changes lead to disease risk changes.  Or, as I’ve seen in plenty of grant applications, identify the physiologic or molecular target that we can put a drug on to get the benefit of weight loss for health, without the work of losing weight.  We need people who will participate in trials like these – they are important for advancing science.  But is there a real benefit for Barb?  Honestly, maybe not much.  The study isn’t interested in helping Barb make better, healthier, choices.  They aren’t including the behavioral strategies she needs to achieve long term weight loss.  That’s not their goal. (Harsh? yes.  True? pretty much.)  So when the study is over, Barb will go back to living her life and the weight will likely come back.  (You can say maybe not, but I can pull a pile of studies that show this is what happens – achieving short term weight loss is relatively easy in science, keeping it off is not. Most people gain the weight back, and then some – so they are worse off.)  And it turns out, weight cycling is actually not good for your health.  Maybe participating in that study does more harm than good for Barb.

But what if Barb was approached about participating in a weight maintenance study?  Honestly, it would probably sound a whole lot less appealing to Barb, who’d like to lose a little weight.  But the weight maintenance study is focused on helping Barb make long term changes in her life.  Those that are durable.  Durability is what matters for your risk of heart disease, diabetes and cancer.  Is Barb going to see a benefit from participating in this study? Yup.  Because even if she doesn’t lose any weight, if she doesn’t gain any weight, she’s better off.  The reality is there all kinds of in between and Barb needs to know what she’s getting and what she’s not getting.

I’m not saying people shouldn’t participate in trials that provide them with no direct personal benefit.  The generous men and women who have knowingly volunteered to do so have advanced science in countless, critical ways. My lab does BOTH kinds of studies.  We ask people to complete surveys during their cancer care that will provide us with important information to identify intervention targets and it won’t directly benefit the men and women who complete those surveys.  But there is also science out there that can benefit the participants, directly, and we do this science too.  If you aren’t willing to do the former, you might be willing to do the later.  If you’re asked to participate in a research study, ask the questions and find out more before you say no.  It might be a study that helps us advance science or it might be one that helps you AND advances science.