How would you feel if, after years of searching for a diagnosis, you finally found out you have an autoimmune disease, and then you realized that your doctors will have to experiment on you to find the right treatment?
That’s the state of the art today in autoimmune diseases like Crohn’s, lupus, and MS.
At least 50 million Americans (twice the number of cancer patients) suffer from autoimmune diseases. Each of the 90 or more named diseases is represented by a variety of stakeholders (patients, specialists, researchers), with little sharing of data across groups, and even less across diseases.
Although the cancer (and rare disease) communities are already moving to collect and share data and turn that data into information, and despite the similarities (unmet needs, heterogeneous diseases, poor diagnostics), the “autoimmune communities” are lagging some 50 years behind cancer R&D in data collection, sharing and analysis, and therefore in improving diagnoses and treatment.
Some reasons autoimmune diseases have been neglected:
Like cancer, autoimmune diseases are multifactorial and heterogeneous, and we have little understanding of the contributions of genetic, epigenetic, cell biology, metabolic, microbiological and environmental factors.
Drug development has been difficult, with a history of repeated failures (e.g., lupus) and the need for multiple attempts to succeed (psoriasis, RA, MS).
Even worse than cancer, the autoimmune clinical landscape is extremely siloed, with multiple specialists (gastroenterologists, dermatologists, rheumatologists) and very few clinical immunologists.
Diagnosis is difficult, with vague symptoms that wax and wane, and undereducated clinicians likely to dismiss patients as hypochondriacs.
Where we do have FDA-approved treatments (psoriasis, RA, and MS), we lack protocols for matching patients to drugs that differ in mechanism of action, effectiveness and cost; thus clinicians tend to try the cheapest drug first.
If big data (and technology) have helped in cancer and rare diseases, can they help in autoimmune diseases too? How can data-driven research in –omics and immunology help improve prevention, diagnosis, prognosis and management?
We need to collect data and share it with those who can make it useful.
Acquisition: What if we had initiatives like Genetic Alliance or Patients Like Me, for autoimmune patients to collect and donate data?
Sharing: Can we scale efforts like TD1exchange, Smart Patients, and Crohnology across the growing spectrum of autoimmune diseases?
Analysis: Can we apply big data approaches (Humedica or Flatiron) or pattern recognition (like Ayasdi and GNS) to redefine understanding of the autoimmune disease spectrum? Perhaps there are more than two types of diabetes. Could crowd-sourced clinical trials improve drug development? Can crowds improve the success in difficult cases such as those in CrowdMed? Could competitions such as Kaggle help sort out treatment protocols?
What can we learn from the cancer and rare disease communities to pull the technology levers and get started, so that doctors will no longer have to experiment on their autoimmune patients! How can we make autoimmune communities less lonely?
If you are working to bring new tools and information to the autoimmune community- whether it is a patient community, a chronic disease management approach or tool, new -omics research (genomics, proteomics, microbiome, etc.) or other type of data driven solution - let’s talk so I can include you in my upcoming research.
Calling all rabble-rousers, misfits and others to come help me find out how to make the autoimmune communities less lonely. Contact @DrBonnie360 at email@example.com.
Have you ever noticed a problem and wondered why no one fixed it sooner?
That is exactly what Howard Look, who has been the Vice President of Software and User Experience at TiVo, Pixar and Amazon, was thinking when his daughter got type 1 diabetes in 2011. Given his background outside of healthcare, he quickly noticed that the current medical devices are old and clunky and do not talk to each other.
“There was no coordinated effort to do better. So we set off to build something that no one has built before and make the daily life of people with type 1 diabetes a little easier,” Howard explained.
Type 1 diabetes is an autoimmune disease caused when the immune system attacks the insulin-producing cells in the pancreas. People with Type 1 diabetes are dependent on external insulin to live.
The front end of Tidepool’s first application, blip, is a beautiful, intuitive visualization. As shown above and below, it displays a story that is easy to use for both the patient and the doctor. The data is currently being aggregated from 4 devices-
blood glucose meter
continuous glucose monitor
mobile application on cell phone
Future plans include a decision support system to a research dashboard to an artificial pancreas telemetry interface. Importantly, the blip’s messaging interface allows parents and caregivers to interact in a fun, productive way.
When I think about the future of open scientific data collaboration, I get excited about the “Mozilla of diabetes platforms.” Tidepool is an open, cloud-based platform. Developed on GitHub, they are enlisting the open development community to help them develop and extend the scalable platform, which has no limit to the incoming data. They are also building applications on top of the Tidepool Platform that help to bring together data from multiple sources in a vendor-neutral way.
A self-sustaining non-profit seems like a well thought out way to bring collaboration to a fragmented industry. The source code for the Tidepool Platform and applications will be available for free to all. They plan to be self-sustaining by the end of 2015, by also offering its platform as a hosted service to commercial device makers.
“ We just want to make life easier for those with type 1 diabetes. We have taken the approach to give everything to the community.”
I find Howard’s story inspiring and I want to learn from the type 1 diabetes community and apply it to other autoimmune diseases.
The next few blog posts will include interviews from entrepreneurs using new digital tools- including Big Data, open source and social networking-to leverage the power of patients to help bring us all more personalized healthcare.
We will start our exploration into patient communities with those working to make the lives of patients with type 1 diabetes a little easier- Tidepool and the T1D Exchange. Then we will explore My Health Teams, Smart Patients, and PatientsLikeMe.
With curious anticipation, I arrived at CES for the third year, not knowing what to expect. Having interviewed over 150 companies while attending 45 or more conferences, I wondered what surprises Jill Gilbert had cooked up.
Robots on the Runway- a fashion show of robots showing off their wares while walking down a runway to music- was a fun and entertaining way to learn about the current and future uses for Robotics. According to a recent survey of business executives by PricewaterhouseCoopers ,robotics is one of the 10 technology trends on the minds of business executives for 2014.
Robin Raskin, the founder and president of Living in Digital Times brought her sense of humor as she kicked off the fun with the music fanfare.
Fun robots which danced down the runway included:
Parrot Mini- a wireless flying quadricopter, using an accelerometer, ultrasonic sensor, gyroscope, downward-facing camera, is the first flying toy piloted with Bluetooth
Orbotix- captures connected play with a focus on robotics. You can play alone or in groups with multiplayer games of tag and there is also an augmented reality component. Noteworthy is their project to get girls involved with coding using spero
Keeker- not quite a toy and not yet useful- designed to be used at home
Telepresence robots which proudly demoed their communication capabilities were:
Anybots- gives us a 3- D view of events which might include Virtual presence can enable children in medical treatment- working remotely, or seeing a wedding
Educational robots made me wonder what might be next:
Barobo- a robot helping to teach math by allowing the students to see, hear and touch math
Origami Robotics- allowing special needs kids to interact, socialize and learn in new way
Robots that act like another arm included:
Unbounded Robotics -can help a disabled person reach and grab or can be used in a manufacturing setting
Exoskeleton robots that can help the disabled gave the dreamers in the audience hope for the future:
Esko Bionics -can help a disabled person augment mobility, strength and endurance, by allowing someone wheel chair bond to stand upright and have some movement
I found the Robots on The Runway to be both educational and entertaining- a testament to the creativity and imagination of the show’s producer- Jill Gilbert I can’t wait to see what Jill, a self described alchemist, will cook up next year.
Those who know me are aware of my multiple career journey from entrepreneurial dentist, to Wall Street analyst to digital health analyst and business development consultant.
Along the way, life circumstances forced me to harness my zest for adventure and embrace multiple career changes as a normal mode of operation.
Recently, in sharing the end of his life with my dad, I realized for the first time that this might have been genetic. He began his career as a Yale trained mechanical engineer. At midlife, he found himself unemployed and had to reinvent himself, first as an aerospace consultant, then as an accounting student, and then as a stay-at-home dad. Eventually he became a maintenance engineer in the U.S. Post Office Bulk Mail center and finally an internal arbitrator.
After retirement, he continued his arbitration at Bet Tzedek and became a savvy investor in the market. Each year, he proudly shared an investing dividend with each of his 19 grandchildren.
His quadruple bypass reminded him to smell the roses, which triggered lots of international travel via cruise ships with my mom.
As his physical body began to fail, he was able to garner his determination and take action, always seeing the bright side. When he lost quad strength in his legs, he tapped his engineering skills to figure out that he needed to raise the bed and get a hydraulic cushion to help him get out of the chair.
At the age of 86, when his legs could no longer support him and his kidneys started to fail, he proactively told his doctors that “he did not want to ever go back to the hospital or have any other invasive care.” This was the equivalent of putting himself into hospice. Imagine how the medical system would work if more people and families followed my dad’s example.
He seldom complained, showing mindfulness and gratitude while always thanking me for coming to visit. Even on his last day, despite his own pain, he asked me what was I doing to take care of myself.
Yet, until this time, I never appreciated that my natural resilience may have come from my dad. Odd how it sometimes takes losing someone to see what is right before our eyes.
Ongoing research is generating data collected from its users to improve the product.
These examples show three different approaches to building this market. Lumosity began with an engaging front end and is now enriching the data back end. Brain Resource began with data and is adapting their training for the corporate health and wellness market. Cognifit is a hybrid, using its initial data to create products for the professional market but with consumers targeted through providers.
Can these collective new data sources for brain training ignite a growing market for personalized learning?
My first venture into mindfulness was attending a UCLA Mindfulness class. Like many good intentions of behavior change, I got busy and did not stick with the program!
Next, I discovered Headspace, “the World’s first gym membership for the mind,” a fun and playful way to learn meditation and mindfulness on my schedule, whenever and wherever it fit into my day.
A recent discussion with Charlie Hartwell, the operating partner of the Bridge Builders Collaborative, which has invested in Headspace, aptly described my own enthusiasm about their approach which takes, “a 3000 year old practice and puts it into a modern context. The animations make it accessible to consumers and gives it a fun twist.”
Meeting Rich Pierson, a co-founder of Headspace, who is a passionate supporter of the healing powers of meditation, made me wonder about the potential applications in chronic pain and autoimmune disease.
“Although brain games may deal with the outer shell, meditation works as the hard drive and can reprogram you for life,” he proclaimed.
“With 1 million users, split equally among men and women mostly in the 25-45 range across 150 countries” might a mobile mindfulness training app help chronic pain sufferers rewire their brains to live more comfortably?