Interview: Bernard Farrell, DiabetesMine 2011 Design Challenge Judge

Do you have an idea for an innovative new diabetes device or web application?  The DiabetesMine 2011 Design Challenge, an online competition to encourage creative new tools for improving life with diabetes, is accepting submissions until April 29, 2011.  The competition – with cash prizes – is open to all. It  welcomes entries from any individuals or organizations passionate about diabetes and product design.  It also welcomes entries from kids under 17, which will be judged in a separate category.  I had the opportunity to interview one of this year’s design challenge judges, Bernard Farrell.  Bernard, who grew up in Ireland, is a software architect, patient advocate, and diabetes technology blogger. He’s heading towards his 39th year of living with type 1 diabetes.

You were diagnosed with type 1 diabetes in Ireland in 1972.  How old were you?

I was 15, and leading a fairly busy teenage life.

Can you tell us a little bit about what life was like in Ireland at the time of your diagnosis?  What happened during the months or weeks leading up to your diagnosis?

I was diagnosed in September at the end of summer. I’d just learned to skin dive and scuba dive.  I’d been in the water with friends and siblings for over four hours a day, plus we ‘d done a lot of walking and cycling.  I’d had a very active time, which may have masked the onset symptoms.

Some time after getting home from our holidays on the west coast of Ireland I noticed how thirsty I was.  I used sodas to try and quench my thirst, which didn’t help. I was also hiding the soda from my family, so I don’t think they knew initially just how much I was drinking.

I’d also started losing weight.  By the time I was diagnosed I’d lost almost 20 pounds.  I usually weighed about 140 pounds so it was really noticeable. The worst part was leg cramps. My calf muscles cramped up at night,  and I remember pounding them with my fist to try to get them to relax.

On vacation, I injured my big toe slightly and that wasn’t healing. At diagnosis the cut was about 4 weeks old.  Once I was on insulin, it cleared up within a few weeks.

I went to the hospital on a Sunday, without knowing why.  My mum had talked with the doctor, and I think she already knew I probably had type 1. After learning that I did in fact have type 1, a nurse gave me my first insulin injection. When she came to give me the second one, I said I’d do it myself.  I knew I’d be the one doing it from then on.

I spent two weeks in a hospital ward with about ten other men and one teenager about my age. He and I raced wheelchairs down a corridor for fun. Hospitals back then were really boring. All of the men in the ward had diabetes, though they were there for other reasons. One man was in a wheelchair because had both his legs amputated due to diabetes. My early decades with diabetes were frightening because I saw the possible poor outcomes. It was depressing and challenging, not motivating. I had a long conversation with Dr. Donald Barnett of Joslin Clinic in the late 1990s that really turned things around for me.

You’re from a big family.  Were they supportive?  Did anything change in your family after your diagnosis?

I don’t remember whether they were or not (I’ve a poor memory). I do know that my mum was very controlling and I still recall the first time I went low and she yelled at me. But she’s a great cook and I ate very healthily while still enjoying a relatively normal teenage life.  I’ve never asked my siblings what it was like for me to get diabetes.  I imagine it took a lot of attention away from them, but I don’t remember them complaining.

What kind of diabetes care was available to you in Ireland?  Did anything change in your care when you moved to the US?

In these those days we didn’t have glucose meters and used urine test kits to see how our control was. Urine testing only told me if my blood sugar was high enough that I was spilling ketones in my urine. So it was like testing after the horse had left the stable. Surprisingly, we all managed okay, I think because it was life that was more limited.  Diabetes care was limited to a visit every three months with an endocrinologist.  Mine was an older man called Dr. Ivo Drury.  The Irish Endocrine society now gives an award in his name. I think he was like the Irish version of Dr. Joslin, strict rules but they had good results. Insurance coverage for diabetes changed shortly after I was diagnosed.  We were given green books with receipts that were torn out by the chemists (pharmacists) when we got diabetes supplies. The family version of the story is that my dad interviewed the then Minister for Health in Ireland, Erskine Childers. They started talking about healthcare costs, and my dad told him about my diabetes and how expensive it was. Some time after that the free diabetes coverage, paid for by the Irish state, came into being.

You’ve been working for years as a software engineer.  Has your work played a role in your diabetes care?

It has in several ways. It allowed me to move to the US, where healthcare was more evolved, although coverage for diabetes care was spotty at best. Fortunately, my Irish healthcare insurance had a relationship with Blue Cross/Blue Shield so my ‘pre-existing’ condition was covered. Before I left Ireland I’d started using a glucose monitor at home which was the size of a brick and required mains power via a transformer. You put a drop of blood on a Dextrostix strip, washed it off after a minute (had to time that), blotted it dry and then put it into the meter.  It would give you an approximate result. Compared to today’s meters it was horribly primitive.  David Mendosa has some information on this meter here http://www.mendosa.com/history.htm.

Working as a software engineer also gave me good insurance coverage. Like many folks with diabetes, I have to choose my jobs based the type of insurance that they provide, and I’ve been very blessed. The downside is that it’s not a very energetic job, so I used to always try to get a little exercise by running between buildings to go to a meeting or running up and down in stairwells for a few minutes. Sometimes I still do that.

I’ve worked on developing the user interfaces for programs since the early 1980s. That’s the part of the software that you work with to accomplish something. This is challenging, demanding work that requires constantly thinking about problems from the point of view of the person using the software. I take the same approach when it comes to diabetes technology.  I’ve advised some diabetes companies on their early designs, mostly volunteering my efforts.

When did you become a diabetes blogger?

I had been a diabetes advocate in Massachusetts for many years before I became a blogger. Part of my “helping people streak” I got from my parents. In 1996, a group of us organized an annual event at the Massachusetts State House to try to get mandated insurance coverage for diabetes. We worked at it for several years without much success, or even press coverage, despite turnouts of several hundred people. It finally got interest in 1999 after Nicole Johnson, who’d recently been crowned Miss America, came to one of the events. All of the politicians and press turned out to meet with her. Some time after that the legislation was passed.

In March of 2006 I read an article about Dr. Denise Faustman’s research into a possible cure for type 1 diabetes. When I was diagnosed in 1972, the doctors told my mum that “people were working on a cure” and it might be available “within 10 years.”  And since that time I’d heard a lot about possible cures, and discounted all of them. When I read the article about Dr. Faustman I remember tearing up as I thought to myself that she might be onto something. Up to then I’d raised money for the ADA and JDRF at several bikes rides. This time I wanted to do a bike ride to support her work, and I was trying to raise $6,000. I figured a blog might be a good way to spread the word, so in July of 2006, I put up my first blog post. It took me a while to get started on a theme, but even in the early days I was focusing on diabetes technology. One of my early posts had a link to a post by Amy Tenderich that showed a graph from Dexcom.

Can you tell us about the diabetes search engine you created?

Amy Tenderich had started blogging in February 2005 and her first post mentioned that a search for any diabetes-related search, like “diabetes foot care” would result in over 2 million results.  And most of those results were useless.

In the fall of 2007, I stumbled across new Google technology called custom search engines.   I wrote a technical article about custom search engines in September 2007, about the time I started gathering lists of sites with diabetes information: clinics, blogs, products, support groups, camping, anything I could find. And I personally checked out each of these sites before I added them so I knew that none of them were junky sites with little content and lots of ads. And this was the basis for the diabetes search engine.

Speaking of ads, Google wouldn’t let me turn off the advertising that shows up in the results, so I decided to donate that money to support Dr. Faustman’s research. Now I’ve got a list of over 1,500 sites, and it’s still the place I go to when I’m looking for research answers, or to find an older diabetes related blog post by anyone.

Despite all this work, it hasn’t been a widely-used tool. So next week, I’m re-launching the search engine as Diaboogle: your diabetes-minded search engine. Kudos to my wife for the name. She’s finishing up the web design work and it will go live shortly at Diaboogle.com.  I’ll be tweeting about it @Diaboogle. I’m very hopeful that the easier name and better design will encourage more people to use it.

Could you tell us a little bit about Dr. Faustman’s work and why you support it?

Here’s my version of her history, which I’m sure isn’t completely accurate. She initially worked in research on pancreatic transplants and realized that even after successful transplants the new pancreatic cells stopped working after a while. She wanted to get better transplant success so she looked at ways to stop beta cell death.  She discovered that by using something called Freund’s Adjuvent she could destroy the immune cells that were destroying the beta cells. I guess she found that that giving Freund’s to NOD (diabetic) mice who had not yet received their transplants caused them to be cured. You can find a long list of academic papers on her website.  They date back to 1982.

To date I’ve raised about $24,000 to support Dr. Faustman’s research through bike rides, triathlons, and advertising on Diaboogle.com. Ironically, I’m also putting Klondike bars in the freezers at work and donating the proceeds, Klondikes for a Kure. Fortunately ice cream always sells in New England!

As a judge in the DiabetesMine 2011 Design Challenge, what are you looking for?

Living with diabetes is really challenging in both small and large ways. So the designs don’t have to be huge or complicated. What I’d most like to see are simple designs that can be accomplished and change how we feel about living with diabetes, or make it easier to live with and to control our blood glucose.

You’re someone who is familiar with new technology.  What do you think is missing in diabetes care?  What needs improvement?

What’s missing from the products currently on the market is that these companies are focusing on the user as a patient, not as a person. We don’t want clunky, hard to use devices. We want things that are easy to work with and that we can wear going out.  But we also need simple things, like the idea someone had of colored insulin. What about better designed insulin bottles so there are fewer errors in dosing? There’s a lot more software for tracking data now.  How about making it possible to combine the data I get from my pump, continuous glucose monitor, and 3-4 different meters so I can see it all in one place and understand what it’s telling me?

I blogged about diabetes design recently and ended up talking about the choices for carrying cases. One commenter suggested logos for cases.  How about a Nike swoosh or your favorite sports team? That would be an easy change. Some of the newer devices are coming out with telephone sized controllers that allow you a lot of control and provide all the information you want. But what if you’re going out for the evening and just want to know your blood sugar or do a simple bolus, why not provide people with a much smaller controller that can be slipped into a purse or a pocket?

What I’d like to see is much more color, and maybe touch displays. I’d like much more configuration so I can personalize what I’m using to give me quicker access to the things I need, or even something as simple as changing the sound of the alarm so it doesn’t disturb everyone when I’m in a meeting.

Some of these types of changes will not happen unless there is improvement in the process at the FDA. I talked with a friend at a device company who told me that you can’t change the color of a device without applying to the FDA. That’s a waste of time and my tax dollars if the only thing that’s changed is the outside of the device.

What do you think the biggest changes in diabetes care will be in the coming decade?

There were few changes in diabetes care from the discovery of insulin up to about 2005. Yes, we could more accurately measure our blood sugars and give ourselves better insulin. But all we did was modernize the process people had followed from the earliest days of places like the Joslin Clinic.

For the immediate future there’s going to be a lot of work in new drugs. Since 2005 we’ve seen drugs like Byetta and Symlin that really change how our bodies react to food. Victoza, approved for people with type 2 diabetes, has benefits for those of us with type 1. I was very interested to hear what Kelly Close of diaTribe had found using Victoza. There’s research going on with C-peptide, which we used to get with the animal insulins but don’t with the new bio-engineered ones. An injectable version of this may help reduce complications.

Connectivity and device usage continue to explode and the pace of change in consumer devices is constantly accelerating. I think that this changes our expectations for design, features, usability and every aspect of these devices that keep us alive. Companies with innovative designs, like WaveSense or Bayer’s Contour USB meter, are going to be thought leaders. The DiabetesMine Design Challenge is leading the way by encouraging people to think way beyond what is currently available.  It’s already produced some big changes. I can’t wait to see what we get this from this year’s contest.

Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and has continued to write essays and fiction while raising her three sons (and many pets).

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Jessica Apple

Jessica Apple grew up in Houston. She studied Bible and Ancient Near Eastern Studies at the University of Michigan, and completed an MA in the same field at the Hebrew University. She began to write and publish short stories while a student, and continues to write essays and fiction while raising her three sons (and many pets). Jessica’s work has appeared in The New York Times Magazine, The Financial Times Magazine, The Southern Review, The Bellevue Literary Review, Tablet Magazine, and elsewhere. She is the diabetes correspondent for The Faster Times. In 2009 she and her husband, both type 1 diabetics, founded A Sweet Life, where she serves as editor-in-chief. Jessica loves spending time with her sons, cooking with her husband, playing with her cats, reading, biking, drinking coffee, and whenever possible, taking a nap. Follow Jessica on Twitter (@jessapple)