Category: Innovation
The Microbiota Vault
In January, I moderated a symposium that was based (virtually) in Peru to discuss preserving both the culture and the microbes of its indigenous people. Similar events, organized by the Global Microbiome Network, are planned in other regions around the world where indigenous populations still exist. Why is this important?
I’ve written before (here and here) about the importance of a healthy microbiota – those trillions of microbes that live in and on our bodies, especially in the gut. The collection of genes inside these microbial cells in called the microbiome. There are more genes in the microbiome than there are genes in the human body. These microbial genes perform necessary functions in our bodies like helping to digest food and producing vitamins. If some of these microbes die off, the functions performed by their genes are also lost. The loss of microbial species in our guts appears to be playing a role in the rise in chronic diseases that we are seeing in industrialized society. More and more research studies confirm the role of the microbiome in health and disease.
Is the microbiome the key to health?
Interest in the microbiome – those trillions of bugs (bacteria and other microorganisms) in your gut – is increasing and according to an article in the NY Times, drug companies are trying to get in on the action.
As I’ve written before, these bugs may be important in the development of chronic disease leading to the possibility that you can “transplant” healthier bugs into someone with a disease. In fact, transferring the feces (poop) from one person to another has been shown to cure cases of Clostridioides difficile (C. diff) colitis (a life threatening infection of the gut caused by overuse of antibiotics). This is called fecal microbiota transplantation (FMT). Studies are ongoing to see if FMT can be used to treat inflammatory bowel disease (IBD), irritable bowel syndrome (IBS) and other chronic conditions. But there are a limited number of places doing FMT so people are doing their own transplants by harvesting the feces of a friend or family member and using a home blender (I’ll spare you any additional details but the DIY instructions are readily available online).
Patient-collected data
In April 2018, I participated in the 2018 Quantified Self (QS) Symposium on Cardiovascular Diseases held in San Diego. I was reminded of that session several weeks ago while attending the 2nd Annual Meeting of the Society for Participatory Medicine. In both conferences I was struck by the power of patients’ observations and measurements to manage their own diseases.
I first learned about the Quantified Self movement a few years ago while reading about Larry Smarr, an astrophysicist and computer scientist who started tracking his own exercise and weight but ultimately began expanding his self-tracking to include blood tests when he was told he had “pre-diabetes”. He ultimately diagnosed his own Crohn’s disease long before he had any symptoms based on analyzing his own blood and stool tests (including twice weekly stool microbiome analysis). He has since published a how-to guide in a biotechnology journal and participated in planning his own bowel resection for Crohn’s disease in 2016.
Using art to heal
Because Health is Life, our lifestyles are just as important to our health as going to the doctor or taking our medicines. In a paper published June 30, 2015 in the Annals of Internal Medicine, a study looking at survey data found that half the heart disease deaths in the US from 2009-2010 were caused by 5 factors all of which can be modified through healthy behavior: smoking, obesity, high cholesterol, diabetes and high blood pressure. But many of these behaviors are difficult to change and are influenced by our families, our culture and our community.
This picture shows that clinical care by doctors and hospitals accounts for only about 20% of health outcomes. The picture comes from a project called County Health Rankings developed by the University of Wisconsin Population Health Institute (and supported by the Robert Wood Johnson Foundation) that looks at health by county in the US. Addressing factors like cigarette smoking, income, education, employment, housing and clear air can help make communities healthier places to live.
We need to find ways to build healthier communities and the arts may be one way to accomplish this.
Personal experiments
During my medical training, we were taught that if a patient responds to a treatment, it doesn’t necessarily mean that every patient will respond in the same way. The results in a single patient might be due to chance so it was important to look at the results of well-designed research studies before we could conclude that the treatment really worked. In statistics, “N” refers to the sample size in an experiment so we referred to these individual observations as “N-of-1” experiments (and we did not look at them very favorably).
Unfortunately, there are lots of problems with research studies – they take a long time to complete, the patients in the studies are very carefully selected and may be very different from you, there is often bias in the way the results are interpreted, etc.
What if doctors and patients had tools that allowed them to design high-quality experiments specifically for the individual patient?
The bugs we live with
Remember in elementary school science class when we put samples of our hair and saliva in Petri dishes to see what grew? We even used cotton swabs to test the surfaces of our desks and bacteria grew in a few days. These experiments were designed to show us that we have lots of bacteria inside and on our bodies – and all around us. There are microbes (bacteria, viruses, fungi, etc.) everywhere in our “built environment” – the buildings we live and work in – as seen in this incredible animation.
Research suggests that the microbes in our guts play an important role in the development of disease. This collection of organisms, referred to as the microbiome (although technically the collection of organisms is called the microbiota and the genes of those organisms are called the microbiome), may play a role in the development of many diseases including diabetes, obesity, rheumatoid arthritis, asthma, allergies, Crohn’s disease, autism and cancer.
Listen up
Like millions of other people, I became hooked on “Serial”, the 12 episode podcast series that launched in late 2014 investigating the murder of a teenage girl in Baltimore in 1999 (that included phone conversations from prison with her personable ex-boyfriend who was convicted of the crime).
I don’t listen to a lot of podcasts but this was different. It was chatty, used a lot of personal stories and was the perfect thing to listen to while driving, walking or cooking. And I couldn’t wait for the next episode (nor could my 84-year-old mother or my 20-something daughters). Devoting over 10 hours to the program was not only easy but enjoyable. In the process we listeners also learned stuff – about the workings of the legal system, the nature of truth, the problems with first-hand accounts, the limitations of memory and much more.
It was like nothing I had ever experienced before and got me thinking about how we could use a similar strategy in healthcare.
Health is life
When I was an infectious diseases specialist, most of the patients I saw were hospital inpatients but I also saw a few outpatients. They came to see me because of weeks or months of symptoms that their doctors couldn’t figure out and were often worried that they had a mysterious infection that was hard to diagnose. All of these patients had real symptoms – they were extremely tired, had headaches, muscle pains and sore throats. They generally arrived with stacks of medical records – numerous lab tests and notes from other doctors. I also noticed that many of them had serious “real life” problems – bad marriages, difficulties at work, housing problems, sick relatives and more. Perhaps they really did have an infection that I couldn’t find but I also began to wonder if their symptoms were caused by the stress.
My intuition was that many of these patients would benefit from speaking with a social worker, marriage counselor, psychologist, an expert in finding affordable housing or a financial planner. Unfortunately, these services were not part of our health care system. I suspected that many of my patients would get better if we were able to treat the whole patient, not just the symptoms.
Research in real time
This past week, I was reminded of the problem of fraud in medical research when the British courts ruled that the mother of a child with autism had lied about her child’s symptoms. The woman was a supporter of Dr. Andrew Wakefield, the British doctor who published studies connecting the Measles Mumps and Rubella – MMR – vaccine to autism based on “data” he made up.
Published medical studies, especially randomized controlled trials, remain the most reliable way for doctors to make treatment decisions. But, in addition to fraud, there are many other problems with medical research studies including the fact that they cost a lot of money to perform and take a long time to complete. An even bigger problem is that research studies have not been done for most of the questions that doctors and patients want answered. And even if there is a relevant published study, the people in the study may be very different from you.
Patients and parents as partners – part II
What if hospitals worked together to improve the care they deliver to patients with a particular disease (instead of competing with each other)? What if these hospitals considered patients and families their teachers and members of their teams? I’ve written before about the magic of the ImproveCareNow (ICN) network but even I am amazed at how quickly the interest in patients and parents as partners has grown within the network.