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Funding the struggle to empower patients

Cloud fundingI am flattered! The Atlantic recently recognized my pioneering work with self-tracking specifically for people on the Autism Spectrum. Here is the link to the inspiring story of parent John Rodakis using my app Autism Tracker back in 2012, publishing his discoveries as n-1 studies, and then starting the NofOne foundation.
Apple enabled self-tracking to become mainstream
I am grateful to Apple for having opened up a door for me to reach patients directly with self-tracking tools. You can read up about my struggles before the release of iPhone in 2009 here. Now, there is a new challenge. While income from the Apple App Store so far has freed up my time to be able focus on self-tracking, this source is slowly drying up. The reason: Apple took my lead and is now building health tracking apps on their own, offering these for free.
Self-tracking developers face new funding challenges
While this is a great move by Apple that benefits many, it leaves me with the challenge to find new income sources to sustain my work. There is also a need to go beyond the iOS platform to offer self-tracking to many more people. So, what are my principles for forward? First, I would like to stay independent of investors to ensure freedom in my pioneering work. Second, I want to stay in touch with the community of people I am building solutions for. Third, I aim to keep each of my startups lean and flexible. Given the increasing frequency of changes in almost any industry, but especially in healthcare. I am convinced that companies will either need to be very large to have enough stamina to survive frequent changes or need to have a strong support network that steps in when needed. I am opting for the latter, it just fits who I am.
Finding for a community to fund my independent work
I have now a presence on Patreon. Interestingly, Patreon took me through steps to describe my role. I realized that I am “a healthcare activist who creates startups that catalyze change in healthcare”. My ask: support my independent work with a monthly contribution. To make things more interesting I am offering some nice perks. In terms of your generosity and my potential to create change the sky is the limit!
Let’s keep up the struggle!
Uwe

The Gummy Bear Effect

Gummy Bear EffectI had my first experience with placebos when I was very young. This is one of my very first memories. Whenever I had a minor injury as a child, my mother would place a Haribo® Gummy Bear on the boo-boo, the site of pain. She would tell me that “this gummy bear helps against pain” and that I was allowed to eat the gummy bear when the pain was gone. She told me that green gummy bears were especially powerful. Tears dried on the spot. I experienced immediate pain relief. Today I am still surprised about how pain can turn into just a fading memory, and how attention shifts to some other attractor. My placebo-experience catalyzed a shift from pain and anxiety to relief and restored well-being. It all took place in a caring environment that made it absolutely safe to get better. I still remember and can recall that feeling of absolute trust. I like this story. It is a warm childhood memory. I rely on it often. When I saw the Gummy Bear Effect later with my own children it became curious to find out if such a healing experience could be made available to all of us.

The Gummy Bear Effect is a story that also raises questions that are at the heart of placebo research. Here is one:

What promotes self-healing?

When we are in a state of sickness, does the experience of a caring, assuring environment signal our mind and body permission to switch-off stress and to turn-on symptom-relief and self-healing? Is there an On/Off switch to our immune system?

I’ll explore these questions, and also offer practical ideas, tools and designs that draw on what we can learn from family traditions, good patient-doctor relationships, and clinical studies. I’ll describe safe ways to create and benefit from placebo effects.

As I write this I have people in mind like myself who grew up in a caring environment and then transitioned into a world illuminated by the bright light of powerful medical brands.

Let’s explore how we can use pure placebos to harvest medical brand power in a safe and honest way.

Here’s What I Tell People When They Ask If Placebos Really Work

Leu-enkephalinEndorphins are powerful and safe opioids that the body produces. Endorphins bind to opioid receptors in the brain. The same receptors are also used by opioid medications.

Recent studies using the brain-imaging technology showed that taking placebos leads to neurobiological patterns in the brain that can also be observed when powerful pain relievers are given. Petrovic et al (2002)demonstrated that the same regions of the brain are activated when patients receive an opioid pain reliever (remifentanil) or when patients take a placebo. Similar brain imaging studies by Zubieta et al (2005) and Eippert et al (2009) also showed that placebos trigger brain responses that ameliorate pain.

For those who are interested in learning more about fascinating field of brain imaging in Neuroscience, the studies described here used two techniques to generate high definition, three dimensional images of brain function:

Positron Emission Tomography (PET)

PET measures metabolism and the flow of blood to different parts of the brain. PET is a non-invasive method that also allows for some movement during the scan, but it does expose patients to radiation from a biologically active tracer molecule.

Functional Magnetic Resonance Imaging (FMRI)

Similar to PET scans, FMRI measures blood-flow in the brain. FMRI has the advantage that a radioactive tracer molecule it not needed. The image resolution of FMRI is also better than PET. However, since patients need to remain still during FMRI scans, this imaging method cannot be used for experiments where, e.g., patients need to read out words during a scan. Redesigned equipment and advancements in computing power are likely to overcome this barrier in the future.

image: Leu-enkephalin

How I invented Apple’s Health Research Kit

The Apple Watch and Apple’s Health ResearchKit are making news today. I am most excited about the kit. Congratulations Apple! If the health research kit didn’t exist I’d have to invent it. And in fact I did. 12 years ago. I’m sharing my story here, hoping it will inspire others.

Starting in 2001 I submitted NIH grant applications to build a research platform that allows patients to track their symptom and treatment data with a portable device. This was years before the iPhone. So I hacked into a dotcom era keychain device, called the iTag. Then I linked a mobile barcode scanner with my analytical software. A pretty cool idea for the time. Patients could instantly scan-in their pain levels, medication, diet, exercise, and behavior. It only took one click to scan items from a card or booklet. I built a prototype. Today this solution is still the simplest I know for instant data entry. Here is an image from my 2003 grant application:

Simplified Patient Interface (2003)

How would it work in practice? In 2003 bluetooth was making its way into practical applications. The time stamped data from the barcode scanner would get synced via bluethooth with the patient’s computer. The data would be synced via the Internet with the physician’s practice. Or the office staff would read out the data directly when the patient showed up for the next visit. The analytical software drew graphs from the data. The charts could tell a story. The care team would be able to see how different area’s of the patient’s life related to each other. And they could see what happened before / after important events. Such as a change in the patient’s therapy.

 

Information Flow SPI (2003)

 

 

Daily patient reported outcomes graph (2003)

All of this provides several benefits to the patient, the care team, and the healthcare system in general. Real time tracking of how the patient was doing would allow for earlier intervention if things started to get worse, a better understanding of the unique pattern of a patient’s condition would allow for more customized care, and the systematic outcomes tracking would provide a cleared answer to the question: What works?

 

Weekly patient reported outcomes graph (2003)

Years later– the iPhone came out in 2007–I implemented this solution in iPhone apps. TracknShare, Bowel Mover Pro, Autism Tracker, Gratitude & Happiness, Habits Pro, Mindful Eating Tracker were released between 2009 and 2013. These are the most customizable tracking apps out there. Track pain intensities, mood, weight, emotions, durations, frequencies, time and habits. Create your own customized visual scale to express exactly what matters to you.

 

Coming to the App Store in 2009 with a fully thought-out solution I was a pioneer, creating a path for Apple’s Health Kit. And its Health ResearchKit. Apple gave me recognition by featuring my app Autism Tracker as #1 in Special Education for Trackers and References. We also received critical acclaim from Fast Company, Dr. Oz, Teach Hub, The Best LifeMacLifeUniversity of Nebraska Lincoln, Huffington Post, OTs with Apps, HIStalkThe Doctor Weighs InHarvas Media. Autism Tracker is discussed in the textbook “Technology Tools for Students With Autism: Innovations that Enhance Independence and Learning”. San Jose Mercury News featured it as well. Then there were the comical acts that definitely helped spread the word for me and for Apple. Laughing Squid, AJ Jacobs for Esquire Magazine, James Altucher, Mental Floss, to name a few.

Tracknshare for iPhone (2009)

 

 

 

 

 

 

 

 

 

 

What is next? Now that Apple is carrying the torch for patient outcomes tracking and engagement I keep exploring uncharted terrain. Today I am designing consumer experiences that use self-tracking and sharing as building blocks. I am adding new props for the next phase of empowering patients. I start with Honest Placebo pills. Our brand empowers people to design customized experiences on their path to well-being. Our solutions have a feedback loop built-in to help consumers improve their health in iterations. It’s structured, free-style well-being. Zeebo comprises apps, pills, and books. We just launched Zeebo a few weeks ago.

 

Zeebo Effect for iPhone (2014)

 

 

 

 

 

 

 

 

May be Tim Cook will take out his checkbook and write me a bonus. $1 million–that is less than $70k for each year I pioneered mobile patient reported outcomes tracking. And I have great plans for new projects. A $5 million blank check could create a lot of value for patients and the industry. I see a strong case for companies like Apple to give to independent inventors.  People who decided to help push the field forward by focusing their time on Innovation without Distraction. We are lean-game-changers who create and execute on ideas without the overhead of raising capital or filing Intellectual Property. Tim, if you read this, please donate here. Let’s keep making a dent in the healthcare universe!

Everything is Possible – Just Do It

 

But what to do? Just stay in touch with the world and your Self to guide your action. I didn’t say it’s easy.

So I am making placebos. Anyone can make a placebo, right? Some say, “Placebos are sugar pills.” A sugar pill can be a placebo. Just take a Tic Tac.

I don’t agree. But Tic Tac is a useful example for exploring what makes a good placebo. Tic Tac come in pill-shape reminding us of taking-medicine. And Tic Tac have a strong, meaning-conveying brand. It’s just that the brand message is about pleasure – and not so much about reducing pain (or other bothersome symptoms). Yes, I might take a Tic Tac to distract myself. But I would not expect the Take-a-Tic-Tac-Experience to trigger my body to release powerful endorphines that relief pain. And Tic Tac taste sweet. Real placebos don’t taste sweet, right?

Turns out expectations matter when it comes to placebos. What you might not have expected – until right now, is that placebos can work even when we knowingly take a placebo. Well, now you know. The human mind is amazing. Once it knows something (like, placebos can have real effect) it will start working with that knowledge.

So I let the subconscious mind do its work. Here is a thought that just came to mind. Love. I know it’s “only in your mind”. Yet love makes your brain release oxytocin, a hormone with real – life changing  – impact. May be taking a placebo is a declaration of love? In form of the placebo I ingest a powerful message directed to my future Self. The Self precisely 3 minutes from now… Before I get carried away with great expectations, here is what I did:

We made Zeebo Relief – the Honest Placebo pill that has all the features of a great placebo. Check it out here: www.zeeboeffect.com