"Strata Rx" entries
By Julie Yoo, Chief Product Officer at Kyruus
Once upon a time, a world-renowned surgeon, Dr. Michael DeBakey, was summoned by the President when the Shah of Iran, a figure of political and strategic importance, fell ill with an enlarged spleen due to cancer. Dr. DeBakey was whisked away to Egypt to meet the Shah, made a swift diagnosis, and recommended an immediate operation to remove the spleen. The surgery lasted 80 minutes; the spleen, which had grown to 10 times its normal size, was removed, and the Shah made a positive recovery in the days following the surgery – that is, until he took a turn for the worse, and ultimately died from surgical complications a few weeks later. 
Sounds like a routine surgery gone awry, yes? But consider this: Dr. DeBakey was a cardiovascular surgeon – in other words, a surgeon whose area of specialization was in the operation of the heart and blood vessels, not the spleen. He was most well-known for his open heart bypass surgery techniques, and the vast majority of his peer-reviewed articles relate to cardiology-related operating techniques. High profile or not, why was a cardiovascular surgeon selected to perform an abdominal surgery?
A tool for outreach to patients produces unexpected benefits
The traditional, office-based model for health care is episodic. The provider-patient relationship exists almost completely within the walls of the exam room, with little or no follow-up between visits. Data is primarily episodic as well, based on blood pressure reading done at a specific time or surveys administered there and then, with little collected out of the office. And even the existing data collection tools—paper diaries or clunky meters—are focused more on storing data that on connecting the patient and provider through that data in real time.
There is no way to get in touch when, for instance, a patient’s blood sugar starts varying wildly or pain levels change. The provider often depends on the patient reaching out to them. And even when a provider does put into place an outreach protocol, it is usually very crude, based on a general approach to managing a population as opposed to an understanding of a patient. The end result is a system that, while doing its best within a difficult setting, is by default reactive instead of proactive.
An Interview with Julie Steele
A week or two ago, I got to correspond with Danielle Brooks of Disruptive Women in Health Care about the work I do here at O’Reilly. The following interview is reprinted here with their kind permission.
Tell us about your work. What drew you to the area?
I have mostly worked as a book editor, until just a year or two ago. I was working on books about databases, machine learning, visualization, and other relevant topics when O’Reilly launched its Strata conference on data science, and so I became involved in that conference. But as Strata took off, it became apparent to us that certain communities — and certain types of data — were special. Health care is one of those areas: the insights that data analysis can give us about ourselves and the things that ail us are enormous, but the risks of over-sharing and the resulting constraints such as HIPAA also present very real challenges.
In 2012, O’Reilly decided to launch a new edition of its data science conference to focus on health care, and that’s how Strata Rx was born. I was asked to become its Program Chair, along with Colin Hill, CEO of GNS Health care, and so I have spent that last 18 months learning everything I can about the (very complicated!) health care industry. Colin and I are great partners because of the complimentary backgrounds we bring together — Colin from the health care industry side and myself from the technology side. Ultimately, that’s what Strata Rx aims to do, too: we hope that by bringing together professionals from all parts of the industry (payers, providers, researchers, analysts, advocates, developers, investors, and caregivers, just to name a few) we can begin to solve some of the large and complex problems facing us in this area.
Big Data and analytics are the foundation of personalized medicine
Despite considerable progress in prevention and treatment, cancer remains the second leading cause of death in the United States. Even with the $50 billion pharmaceutical companies spend on research and development every year, any given cancer drug is ineffective in 75% of the patients receiving it. Typically, oncologists start patients on the cheapest likely chemotherapy (or the one their formulary suggests first) and in the 75% likelihood of non-response, iterate with increasingly expensive drugs until they find one that works, or until the patient dies. This process is inefficient and expensive, and subjects patients to unnecessary side effects, as well as causing them to lose precious time in their fight against a progressive disease. The vision is to enable oncologists to prescribe the right chemical the first time–one that will kill the target cancer cells with the least collateral damage to the patient.
How data can improve cancer treatment
Big data is enabling a new understanding of the molecular biology of cancer. The focus has changed over the last 20 years from the location of the tumor in the body (e.g., breast, colon or blood), to the effect of the individual’s genetics, especially the genetics of that individual’s cancer cells, on her response to treatment and sensitivity to side effects. For example, researchers have to date identified four distinct cell genotypes of breast cancer; identifying the cancer genotype allows the oncologist to prescribe the most effective available drug first.
Herceptin, the first drug developed to target a particular cancer genotype (HER2), rapidly demonstrated both the promise and the limitations of this approach. (Among the limitations, HER2 is only one of four known and many unknown breast cancer genotypes, and treatment selects for populations of resistant cancer cells, so the cancer can return in a more virulent form.)
Increasingly available data spurs organizations to make analysis easier
Genomics is making headlines in both academia and the celebrity world. With intense media coverage of Angelina Jolie’s recent double mastectomy after genetic tests revealed that she was predisposed to breast cancer, genetic testing and genomics have been propelled to the front of many more minds.
In this new data field, companies are approaching the collection, analysis, and turning of data into usable information from a variety of angles.
Exploring an upcoming Strata Rx 2013 session on big data and privacy
Databases of health data are widely shared among researchers and for commercial purposes, and they are even put online in order to promote health research and data-driven health app development, so preserving the privacy of patients is critical. But are these data sets de-identified properly? If not, it could be re-identified. Just look at the two high profile re-identification attacks that have been publicized in recent months.
The first attack involved individuals who voluntarily published their genomic data online as a way to support open data for research. Besides their genomic data, they posted their basic demographics such as date of birth and zip code. The demographic data, not their genomic data, was used to re-identify a subset of the individuals.
Open source communities to help find the next blockbuster drug
Big drug companies are not what they used to be. It is harder to find new drug candidates, to test them, and to get them approved than ever before. Drugs that are “mere chemicals” are becoming more and more complex. Frequently, new drugs require DNA interaction, which requires them to be manufactured through a mostly automated cellular process rather than just mixing the right components in the right order. Just the changes to the refrigeration requirements for these new drugs represents a challenge to drug manufacturers, pharmacies and hospitals.
Combined, these difficulties create a combustible business environment that can ignited by the pressure of expiring patents. Experts estimate that the approval process ensures that a drug company actually gets only about 12 years of exclusivity before a 20-year patent wears off. So in pharma-land, the march of popular medications to generic status forces the original developers into the famous Innovators Dilemma. Most companies face competition from the generic versions of their own previous work.
Donald Berwick discusses health care improvement: goals, exemplary organizations,and being at a turning point
A video interview with entrepreneur Colin Hill
Last week, a wide-ranging interview on data in health care took place between Dr. Donald Berwick and Colin Hill of GNS Healthcare. Dr. Berwick and Hill got together in the Cambridge, Mass. office of the Institute for Healthcare Improvement, a health care reform organization founded by Dr. Berwick, to discuss data issues related to O’Reilly’s upcoming Strata Rx conference.
Berwick returned to IHI after his year as administrator of Centers for Medicare & Medicaid Services. Throughout these changes he has maintained his stalwart advocacy for better patient care, a campaign that has always been based on a society’s and a profession’s moral responsibility. Even an IHI course for the “Patient Safety Executive” program puts “Building a just culture” on its agenda.
Among the topics Berwick and and Hill look at in these videos are the importance of transparency or “turning on the lights,” ways of learning from the health provider system itself as well as from clinical trials, types of personalized medicine, the impediments to collecting useful data that can improve care, exemplary organizations that deliver better healthcare, and how long change will take.
The full video appears below.
How our vision for this important conference is shaping the program we hope to present, and how you can get involved
After a strong inaugural event in October 2012, Strata Rx is heading into its second year. My fellow chair, Colin Hill, and I have spent a lot of time thinking about and discussing what we’d like to see on the program this year, and I thought I’d share some of those thoughts for anyone considering submitting a proposal or attending the event. (The Call for Proposals is currently open until April 10.)
One of the most interesting challenges in creating a program about data science in healthcare has been deciding what to leave out. Topics like genomics and cancer research are so vast and complex that they can and do have entire conferences about just them. While we won’t reject a talk for centering on a topic like this, it has to be relevant to one of our larger goals, as well.
What we hope to accomplish with Strata Rx
So what are those larger goals? Well, here are a few of the key ones.
Promote dialog across silos
Right now, there are already a lot of niche conferences for specific groups in healthcare. There are events for specific areas of research, such as oncology and genomics, as previously mentioned. There are also events for specific kinds of people, like pharmaceutical reps, or insurance providers. Those conferences that do cut across the industry are only for one level of people, such as Chief Officers.
We want Strata Rx to convene a broad swath of people with an interest and a stake in the healthcare system: researchers, funders, providers, application developers, patient advocates, board members, insurers, IT staff, legislators, and everyone in between. By starting conversations among these different specialists, and by combining their relative expertise, we believe we can build a stronger community that is better able to solve problems.
We aim to be fire-starters, igniting connections and conversations.