Design Thinking for Patient Engagement

Design thinking.  It’s the “it” buzzword these days, but what does it mean for healthcare and patient engagement?

Design thinking is human centered. Design thinking is synonymous with the firm IDEO, a global design consultancy.  Week three of Stanford’s Patient Engagement class was “Design Thinking for Patient Engagement” lead by Dennis Boyle.  Mr. Boyle is a founder of IDEO and heads up their Health and Wellness practice. IDEO’s health and wellness practice focuses on innovations that encourage healthful behavior changes.

I was really excited about this week, as you may remember that I have a (slight) crush on the work IDEO does. We learned that design thinking, the IDEO way, is a human centered approach to innovation, using empathy to understand people’s needs on multiple levels including: social, cognitive, emotional, physical, and cultural. To do this, Mr. Boyle’s teams apply these four principles:

  1. Develop empathy for your user by understanding their journey.
  2. Doing is believing.  Always have a bias towards action.
  3. Solicit feedback from your users in the short term and long term.
  4. Engagement is social, it is contagious.

In order to facilitate change, there must be belief from all users. Design thinking projects at IDEO always start with an open ended question, including:

How might we…..?

What if…..?

What is the future of……?

Taking a human point of view is critically important in healthcare, as demonstrated by the story of Leilani Schweitzer.  Ms. Schweitzer is a mother whose child was lost at 20 months old because the medical technology that was saving her son’s life failed to incorporate the most important factor: the human factor.  I’ve scoured the internet to try and find you a video of Leilani’s story from this year’s Medicine X conference. It is not posted. Her story was so gripping, so intense, that when I watched her tell it live, I realized I wasn’t breathing.  When it was over, I felt sick.  You can read the text of her talk from Medicine X on her blog, Not With Great Frequency. I am, however, able to share with you a different video of Leilani’s story from a TedX talk last year.

All this talk about patient engagement and healthcare delivery is not just wordplay.  It’s not just a fad. Designing healthcare with a human point of view is not a a fluffy marketer’s concept. At its core, patient engagement is a real initiative seeking to change the delivery of healthcare and to make patients prime stakeholders. To have real patient engagement we have to listen to patients.  (If you haven’t clicked through to read Leilani’s story yet, here’s another opportunity to click through to her story.)

You may remember my previous posts on some experiences I had in the pharmaceutical industry where asking “what if” was seen as insubordinate, where “what if” was a dangerous, negative question.  I am happy to report that since I left that industry four years ago, there seems to be some improvement in this mentality. One example of this would be the Lilly COI lab, which was created on the premise that the drug development process must improve.  It must become more open, and patients are needed to help make that happen.

I’ll share with you a summary of one of the patient engagement design stories Mr. Boyle highlighted that really resonated with me because it had a personal impact on me for a number of years. Ever heard of Forteo?  Forteo is a legitimate wonder drug for patients with severe osteoporosis.  In our world, we would talk about patients with t-scores less than -2.7.  T-scores measure a patient’s bone density and are used as a gauge to determine whether a patient has normal bone density, osteopenia or osteoporosis.  How the heck do I know anything about t-scores and osteoporosis?  Forteo was my baby for years at Lilly.  It was one of the products I launched during my time there and is a product I would still be proud to carry today.

Here’s a little biology background before we go further.

While you are alive your bones are constantly in a state of turnover: a process of rebuilding and resorption (removal).  (Kind of like how your DNA is constantly repairing itself, too.) Antiresorptives like Fosamax, Actonel, Boniva, and Reclast all work by reducing the biologic activity of osteoblasts (bone building cells) and osteoclasts (cells that resorb or remove damaged bone) to reduce bone turnover.  In normal bone, these cells work together as an important checks and balance system.  You don’t want too much or too little activity of either kind. When women hit menopause a lack of estrogen slows down and decreases the number of the osteoblasts and the checks and balance is thrown off leading to “osteoclasts gone wild,” and for some women, osteopenia/osteoporosis. (Not too shabby on the recall for not having had this conversation in four years, if I do say so myself.)

Forteo is the only osteoporosis medication on the market that builds new bone mass. Forteo is not an antiresorptive, it is a biologic injectable that actually stimulates new bone growth. Forteo is a daily injectable that is taken for two years, at which point a patient then goes onto an antiresorptive to maintain the bone they gained. The antiresorptives and monoclonal antibodies available on the market today all increase bone density, which means they make the remaining bone you have more dense, but no new bone is gained, despite how their marketing is interpreted by many physicians and patients.  I’m looking at you, Sally Field.

Biology class, over.  Now, back to my design thinking story.

Osteoporosis can be a debilitating disease yet compliance with medication is not good. Here’s a visual what Forteo does:

Forteo patient engagement IDEO


That is the iliac crest of a real patient treated with Forteo. Her starting t-score was about -2.7.  If you were a patient with severe osteoporosis wouldn’t you want the bones on the right?  If you were a physician wouldn’t you want your patients to have the bones on the right?  I would!  Remember, no new bone mass is gained with antiresorptives.  All that happens is the remaining structures become stronger, more dense. To grow new bone mass, Forteo is the only option out there.

We carried actual plaster cast versions of these bone models everywhere in the field.  I had bone models in my purse, my sample bag, falling out of my car and crumbling (maybe her t-score was a -3.5 on some days due to the fracture she suffered as I got out of my car.)  I demonstrated how “easy” it was to inject oneself by using our sample devices filled with saline to actually inject myself during product demos. (Yes, I used alcohol swabs and real sterile BD needles and carried a sharps container around with me too.)  For someone in their 20s with no arthritis, a tiny needle and an eight step process was no big deal.

The reality was 80 year old women with arthritis and other issues had a really difficult time using the delivery device. It didn’t matter how great the science was because they couldn’t use it.

If the proof is in a visual, then everyone should have been jumping on Forteo.  But they weren’t. The science was great, (of course patients will do this, show them bones!), but the delivery did not have empathy for the user journey. This product asked 80 year old ladies to use a delivery device with eight steps including priming, injecting and twisting a difficult dial.  The reality was 80 year old women with arthritis and other issues had a really difficult time using the delivery device. It didn’t matter how great the science was because they couldn’t use it.

IDEO worked with Lilly to radically redesign the device, eliminating the priming and dialing, and reducing steps to inject to two.  This device was well received and Forteo saw real up-tick in the osteoporosis market.  After all, if a patient can use the device easily AND get new bone, well then, it becomes a different story.  Also, I no longer had to inject myself to prove that it was easy and the needle was not scary, so that was a plus.

When the Forteo example was shown during our class I almost fell out my chair because it was such an “ah ha!” moment for me. I wish I could have shared my story with the class, but it was a recorded lecture. At the time I was selling Forteo I had never even heard of design thinking or IDEO.  It never would have crossed my mind that such a complex, human focused process would have gone into the redesign. We were told patients helped to design the new delivery device and now, years later, I really understand what that means. I had always figured a bunch of engineers sat in a lab and just came up with it, which leaves me with my final thought on this topic.

At the beginning of this week’s class we were asked what design means to us, and here was my response:

Design, to me, is creating an experience or a product that seems effortless to the end user.


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