The Lybbaverse / health  

Personal Experiments

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Many of us struggle with chronic disease or something worse, an undiagnosed low-grade malaise we must learn to live with. If you walk outside and look at two people on the street, chances are awfully good that one of them has a health problem that impacts their daily life. It’s easy to forget that over 50% of US adults have one or more chronic diseases while nearly half the population reports suffering caused by minor problems like undersleeping, unexplained fatigue or mental illness.

There are many medications offered for our ailments, but most drugs are designed to treat serious problems and don’t always help as much as we would like. In fact, one drug company estimate indicates that 90% of drugs work in less than 50% of the targeted population. On average, medications for mental illness produce only a 10% improvement compared to placebo and are typically evaluated only in those with the most severe illness. These small gains, and all this uncertainty, come with a hefty price tag: unpleasant side effects and adverse drug interactions. For example, adverse drug interactions result in 1.5M annual hospitalizations including an estimated 100,000 deaths, more than auto accidents and AIDS combined.

Peer-to-peer healthcare

Most of the research that leads to devices, drugs and guidance for our physicians is funded by for-profit entities. The real money is made on ‘blockbuster’ drugs or devices that large numbers of people have to use on a long-term basis. This limits the interventions and conditions that the commercial research industry can reasonably investigate.  It also means that the healthcare system tends towards putting us on life support, but knows much less about how to help us live healthy, drug-free lives.

For serious genetic or infectious illnesses, drugs are often the only option for treatment.  However, people in growing numbers are turning to the Internet for advice because the health system is poorly equipped to help them with the prosaic problems that, nevertheless, negatively impact daily life. Others are unwilling to accept the cost and risk that come with drug-based treatment. As a consequence, nearly 40% of us participate in a multi-billion dollar alternative medicine and supplementation industry, one that is largely unregulated and largely lacking in evidence.

In recent years, the NIH has started investing in research on alternative and complementary medicines, but the government funding process is conservative in nature and the complex protocols of some alternative therapies are not always easily evaluated using the current tools of clinical research. 

In the end, we simply don’t know what works, and are left to our own devices, trying one change after another without much support. And yet, if you wade through posts on patient forums, there appears to be widespread belief that many treatments work in some, and while a great deal of this may be explained through the placebo effects or confirmation bias, it is likely that hidden in these experiences lie profoundly valuable knowledge that might improve the health of all of us.

As an example, a psoriasis patient on one forum discovered that a mixture of Glycerin and Witch Hazel (costing a few dollars each at your local drugstore) stops itching and flaking in most people. For some, it also appears to cause psoriasis to recede entirely. Unfortunately, there’s no evidence of this beyond the discussion thread (I searched PubMed and only found some early studies of Glycerin).

How to know when something works?

What is missing in this patient-to-patient exchange is a means to document this individual experience. What is valuable to a community of us is not that one person tried a treatment and feels that it works, but that they tried something in a specific way that others can review and use with a documented, measureable, repeatable benefit. In other words: an experiment.

An experiment is conceptually straightforward.  We try out a treatment a specific period of time while measuring what it is we want to improve.  We then compare data about ourselves with and without the treatment. In psychology this is called a “single-subject” experiment, a tool long used to assess the effect of interventions. In personalized medicine it is also known as an n-of-1 experiment, and typically used to compare two medications to see which one works best.

The Personal Experiments platform

I have been working with collaborators at the MIT Media Lab, MIT Computer Science Laboratory, Lybba and members of the C3N Project to develop a model of personal experimentation, data sharing and aggregation that helps us evaluate treatments for ourselves.

Our prototype platform, Personal Experiments (http://personalexperiments.org), is available today. It helps you document a treatment you think might be relevant and then combine it with concrete measurements to define an experiment that you and others can run and share the results of.

The platform helps with the hard parts: figuring out how much data you need, calculating the number of treatment cycles you should do, and performing analysis of the results. It uses SMS prompts or various consumer devices to measure your experience and presents the resulting data back to you using simple charts, circling changes that are meaningful, thus indicating whether an experiment was successful.  For example, you can see the user-identified Glycerin and Witch Hazel treatment documented by our platform and an outcome chart showing a patient’s success with the treatment.

Out of the dozens of treatments users discuss online, how can each of us can identify the one most likely to work for us?  Trying simple experiments for all recommended treatments could take months or years; for a complex disease like psoriasis, it could take a lifetime. What we really want to know is which one to try first that is most likely to give us a benefit.

A new approach to discovery in health

So what if all these treatment ideas were easily discoverable?  What if we could gain confidence whether an alternative treatment really worked for us? What if we could share this knowledge freely with others? What if that sharing made it much easier for each of us to prioritize and evaluate treatments? What if patients, acting on their own, could engage in a legitimate scientific exploration of alternative therapies, supplements and lifestyle changes?

With Personal Experiments we are starting to address all these questions. The emerging world of sensors and the ``Quantified Self’’ is making it easier and easier for us to document the results of trying out a new therapy or working with an alternative practitioner. As Personal Experiments observes user’s experience with specific measurements and treatments, it reduces the time required for future experiments, improving the efficiency of personal experiments for everyone.

The platform also identifies those treatments that work reliably vs. those treatments that work only rarely. Because different people with the same disease respond differently to different treatments, over the long run, we plan to personalize this notion of reliability so that we can customize recommendations for each person. Our understanding of how to combine the data in useful ways improves as we work with more and more users.

We invite you to join us at Personal Experiments.org. It’s a work in progress, but we’re available via e-mail and live chat to support your own efforts and to help you influence future development. We’re adding new features and capabilities each month and engaging with partners to help scale the platform.  The more that you engage and share, the more we all learn about how best to improve our health.

What got me interested in STEM

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Dr. Charles Zollner shares with the Lybbaverse what first got him interested in STEM (science, technology, engineering, and technology) education. It wasn't the image of a germinating dandelion on his science book.

I was a bad student for the first 10 years of my life. School just didn’t interest me. I fidgeted. I got into trouble. Anything to break the tedium. I do remember being intrigued by the science textbook I had in my desk in first grade. I remember it to this day. The cover had a picture of a dandelion seed cluster beginning to disperse in the wind. I think we opened that book twice the entire year.

Subsequent years did little to engage me. School was taught in a very rote form. Memorization was emphasized. All that changed in fourth grade. My new teacher that year, Mrs. Maher, had a different style of teaching. She added a sense of wonder to her topics. Instead of teaching us to memorize that the moon goes around the Earth in 27.5 days, she explained that the moon rotates exactly so that the same side is always facing the earth. Isn't that fascinating? Why, yes it is, I thought. Wait a minute, why does it do that? Her teaching style engaged me. Her enthusiasm was contagious.

Although subsequent years generally lapsed back into the traditional style, a seed had been planted within me. I began to read more. When asked what I wanted to be when I grew up my answer was generally, an astronomer or a chemist or both. Some sort of scientist.

For me, this geeky interest in how things work eventually found a place to land, like a dandelion seed, within the healthcare field.  If you want something fascinating, there is nothing more fascinating than the human body. If you want to learn about something in order to and make things better, nothing is more relevant and practical than the human body.

This style of teaching can apply to any subject. History can be taught as a dry memorization of dates or as the epic story of empires rising and falling, chance events that forever alter fates and tales of intrigue that have brought us to where we are today.

As today’s education tends toward teaching for an upcoming standardized test, I despair that the students coming up are being denied that sense of wonder.  The extent to which we can capture the imaginations of today’s youth will be the extent to which we can benefit from their talents in making the world a better place. 

As the world careens into a precarious time, whether our own civilization will rise or fall may ultimately depend on the degree to which we have engaged the intellectual resources needed to set it on a steady path. That will likely depend on this one metric: how well are we educating our youth?

Read more posts by Dr. Charles Zollner on his blog.

Q&A with Dr. Charles Zollner

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Chiropractor Dr. Charles Zollner is a new clinician contributor to the Lybbaverse. 

Dr. Zollner notes, "Most people nowadays, at least in the first world, don’t die from infectious diseases. Instead, they grind down from the chronic diseases of civilization. To what extent, through better diet and lifestyle, can we mitigate these factors?" Here are more considerations and insights gleaned from his practice.

What are you most interested in, of late? 

CZ: As a sole practitioner running my own practice, I’m fascinated by the process and balance of maximizing the benefits to my patients with the resources I have available. I call this ideal, “Elegant Simplicity”. This entails the streamlining of resources and processes to help as many people as possible to as great an extent as possible. I was inspired by the book The E Myth by Michael Gerber. It is a business book that discusses the benefits of establishing systems and protocols so that a business (any business) can run efficiently and consistently. Certainly within the healthcare field, we have seen a growing emphasis on protocols and checklists as part of the standard of care. And yet, the danger always lies in catering to the mean at the expense of patients that are statistical outliers. By that I mean using systems that work well for the majority of patients but are less effective with the statistical outliers. The ideal system/procedure/protocol will somehow take into consideration the statistical outliers (i.e. patients that not responding to care) and have additional backup systems/protocols to address them.

In the 15 years I’ve been in practice, I have been trying to hone my skills and procedures to achieve this ephemeral ideal. I wish I could have begun my practice with my current information already under my belt. Similarly, new practitioners have to reinvent the wheel. I think a big challenge within the healthcare field lies in how to best disburse the best practices that have been arrived at through research and, perhaps more importantly, through the individual experiences of practitioners. The big challenge for healthcare, and really any field, in the future will not be gathering information. We are drowning in information. It will be how to best find valuable information (separate the wheat from the chaff) and best distribute it to where it can be used. I suspect this will once again come down to systems and procedures. Elegant Simplicity.

When and why did you become a chiropractor and patient advocate? 

CZ: Like so many chiropractors, it was a personal experience. I suppose my story is typical enough. I injured my lower back lifting weights when I was in my 20s. After a year of pain, off and on, a friend suggested I see a chiropractor. The benefits were remarkable. But what attracted me to the field was that chiropractic was facilitating the body’s innate ability to heal. There were no added injections or medications. It all came from within the body. Which then begged the question; in what other ways can we facilitate the body’s ability to heal and to achieve optimum health?

What first sparked your interest in the health and wellness field? 

CZ: As I’ve evolved as a practitioner, I have increasingly seen the connection between a person’s lifestyle and their benefits from a chiropractic adjustment. Simply put, what they do in the other 23 hours and 50 minutes of their day is going to have a very big effect on the 10 minute adjustment I give them. This is true of any medical procedure we’re giving to patients. Undoubtedly, this is a huge variable that determines the success of anything from a course of antibiotics to open heart surgery.

Another thing that has increased my awareness is my own aging body. I know I won’t get much sympathy from older people, but I just turned 50. There’s a phrase that I think is apt, “The 40s are the old age of youth. The 50s are the youth of old age.” As I look at my mother, who is about to turn 90, succumb to Alzheimer’s, I wonder what things she could have done differently, if she had had a better understanding of health, to avoid that fate. Similarly, what can I do to stay active and alert to the very end. Most people nowadays, at least in the first world, don’t die from infectious diseases. Instead, they grind down from the chronic diseases of civilization. To what extent, through better diet and lifestyle, can we mitigate these factors?

What do you love most about your practice? 

CZ: This is an easy one. Seeing patients get out of pain and experience improved function in their lives. I believe pain permeates all aspects of the patient’s life. Perhaps Grandpa is grouchy or mom is yelling at the kids because of their pain. What then are the societal repercussions of this?

Chiropractic is always emphasizing the connection between spinal alignment/mobility and the health of the nervous system. Research is continually bearing this out. Although the understanding has evolved from the more simplistic “bone out of place pinching on a nerve” concept, the basic principle is still the same. What we now realize is that when spinal joints do not move properly, this inhibits the firing of the mechanoreceptors of those joints. The mechanoreceptors tend to inhibit the firing of the sympathetic nervous system. When they don’t fire due to lack of movement, the sympathetic nervous system tends to go into overdrive. This causes more stress on the body which affects various systems. So more than just relieving pain, we are reducing stress on the body and, in doing so, helping the entire body. One study found that 23% of all people who saw a chiropractor experienced some benefit in a non-musculoskeletal complaint. Indeed, I get that all the time. Patients say to me that they are sleeping better or their digestion is better or they have more energy. One can only wonder what the whole body affects are of the chiropractic adjustment and, in turn, what the societal effects are.

We’re a proud sponsor of #SageCon

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Lybba looks forward to next week's Sage Bionetworks Commons Congress, April 19 and 20, in San Francisco. This year, Lybba is a sponsor of “The Truth of Personalized Medicine: Our Commons Future." Sage Bionetworks is piloting components needed to build a biomedical research commons,creating computational models of disease, releasing infrastructure for collaborative data-driven research, and exploring the boundaries of commons-based governance in health and medicine.

After hearing a lot about personalized medicine, what it will be in the future, and seeing some of the progress made by individuals or single organizations, Sage is now considering how to best address this complex and moveable concept. This year, the Congress is not going to center on how the public can help Sage Bionetworks; it’s about how Sage Bionetworks can help the public build the commons.

Lybba looks forward to engaging with the organizations and individuals that are real cornerstones to success in achieving this goal, as we define projects to take on clinical studies, modeling challenges, patient community formation, and moving forward long after the conference is over.

Gene therapy cures fatal cancer in eight days

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You can do a lot in eight days.
 
You can walk from California to Canada. 
 
You can drive from Lisbon to Singapore.
 
You can cross the Atlantic Ocean on a barge.
 
And now, in eight days, gene therapy can cure fatal leukemia
 
Doctors at the Memorial Sloan-Kettering Cancer Center in New York have conducted an experimental gene therapy treatment with five patients suffering from relapses of acute lymphoblastic leukemia. 
 
This cancer, while usually a death sentence, disappeared entirely from one trial patient in only eight days. Eight weeks later, four other patients in this trial were also cancer-free.  
 
As reported by New Scientist, “The key to the new therapy is identifying a molecule unique to the surface of cancer cells, then genetically engineering a patient's immune cells to attack it.” 
 
The Sloan-Kettering team is preparing for a second trial of fifty patients and is currently exploring more opportunities to battle other cancers with this groundbreaking genetic approach. 

Photo Credit: Scientific American