Thursday, March 5, 2015

Big Data and You

El Mundo, one of the most prestigious newspapers in Spain, created a daily supplement on innovation and entrepreneurship (title Innovadores) and as an advisor to Bankinter's Future Forum I wrote this article on "Big Data and You."
Here is the translation:

Big Data and You

We all accept that there is an abundance of data that are used to define everything about us. The data that are collected are then harvested by all types of entities and put together in ways that communicate more to others than we may want to share. But with the promise that the data cannot be traced back to the individual we release much of what is private about our lives. Nowhere is this more evident than in the health care setting where data are being merged from different sources to produce predictive models for deciding upon the type of treatment an individual should receive.

The use of big health data has been heralded as a giant leap forward in that information from different people can be used to give a fuller picture of what are the risk factors that we need to pay attention to. With these aggregated data and the risk profiles they provide health care providers at every level are equipped with an array of protocols about how to treat a patient. These data can also provide new and compelling alternatives to what would be considered the usual standard of care.

But we must proceed with great caution.  Recent research[1] funded by the National Heart Blood Lung Institute in the U.S. documented that commonly used risk assessments of atherosclerotic cardiovascular disease (ASCVD) overestimated the risk by 37 to 154% in men and from 8 to 67% in women. That translates into a huge amount of people getting treatment they did not need.

Big data are the results of combining lots of smaller bits of information. How big data are gathered and how they are merged can become a problem. This is made worse if at the point of care risk scores replace talking to the patient or the ever elusive listening to what the patient says. The promise of health care providers to “Do no harm” can be compromised by the overreliance on tools that are meant to add to the clinical conversation and not dominate them.


Jane L Delgado, PhD, MS,
President and CEO
National Alliance for Hispanic Health
Washington, DC
janeonhealth@gmail.com



[1] Andrew P. DeFilippis, MD, MSc*; Rebekah Young, PhD*; Christopher J. Carrubba, MD; John W. McEvoy, MB, BCh, BAO; Matthew J. Budoff, MD; Roger S. Blumenthal, MD; Richard A. Kronmal, PhD; Robyn L. McClelland, PhD; Khurram Nasir, MD, MPH; and Michael J. Blaha, MD, MPH. An Analysis of Calibration and Discrimination Among Multiple Cardiovascular Risk Scores in a Modern Multiethnic Cohort. Ann Intern Med. 2015;162(4):266-275. doi:10.7326/M14-1281


Tuesday, December 30, 2014

Fruits and Vegetables Should be Desirable and Affordable


Today the Alliance released the 2014 Healthy Americas Survey, a bilingual phone survey with a nationally representative sample of 846 respondents fielded from February 16th to March 2nd of this year. The Downloadable version of the 2014 Healthy Americas Survey is available at the Alliance’sHealthy Americas Institute website at www.healthyamericasinstitute.org

The findings show that access to care is part of the solution for achieving the best health outcomes for all. While there are obvious steps people can take which are critical, e.g., drinking less soda and sugary drinks and eating more fruits and vegetables, these options are not as simple as they may appear.

There is a huge amount of creative talent and dollars that are spent on getting people to buy sugary drinks. It would be wonderful if we could spend as much on advertising for fruits and vegetable and other healthy options as is spent on options that are not as healthy.  While PSAs are helpful they are few and far between and often play in the off-hours to fill in the time when no one wants to buy advertising time. Moreover, fresh fruits and vegetables are often financially out of reach for families with modest means.

We need to make it desirable and easier for everyone to eat in a healthier way.  

Tuesday, December 23, 2014

It’s Not About the Base— It’s About Quality

Quality health outcomes are not just about the denominator, big data, or public health data; it is about the individual. The allure of numbers is strong because numbers can be analyzed and the implication is that the data are objective. Nevertheless, our quest for precise data and measurements is often futile as too many times visually intoxicating three-dimensional charts tell us nothing about what is happening at the point of care.

Our measurement system must be radically different from what it is today. We should stop using the medical, economic, or business derived terms of “patient” or “consumer”  and focus on the person or individual. For the first time, technology and individual use of powerful computing devices (smartphones) give us the capacity to move beyond groups to individual focus.  

At the very least quality health measures should be publicly reported and include more mortality and morbidity outcomes. Additionally measures must be sufficiently nimble to:

  1. Rapidly reflect new science.  
  2. Rapidly include new technologies.
  3. At a minimum be analyzed by race, ethnicity, and gender.
  4. Encourage care that is tailored to the individual.
  5. Avoid the tyranny of big data when caring for the individual.
  6. Address that quality is defined in different ways by each person. 
Our future care depends on having measures that matter to each one of us.

Thursday, June 19, 2014

The Naming of Biosimilars

At the cutting edge of all our progress in personalized medicine is the development of  biologics. These are medicines that are manufactured or extracted from biological rather than chemical sources. Biologic is used to describe the structure in the original or innovator medicine that was developed and biosimilar is used to describe the medicines that are developed that are similar to the original biologic.

Biologics and biosimilars hold great promise for the next generation of personalized medicine but only if we are able to track their effect on individuals. These are powerful new medicines. Consumers should know what they are getting and healthcare providers should be able to track the effects of what their patients get. While it is good to have these new medicines it is essential to be able to track them once they are given to patients.

To make this point we sent a letter to the FDA Commissioner today that was signed by over twenty-one partner organizations reaffirming the importance of giving each product a unique name www.hispanichealth.org/biosimilarsFDA . The value of what we know about the impact of these products would be substantially diminished if we are unable to track the products once they are approved. 

It is good science, good practice, and common sense that each product should have s prefix or suffix added to its name so it can be tracked. All that is needed is a distinguishable name. That should be an easy call for the FDA to make and one that responsible companies should applaud.

Tuesday, June 3, 2014

Sugar Sweetened Beverages--- Less is More than Enough

And so it continues...The Alliance is the lead signator supporting the NYC Health Department. Tomorrow (June 4) the Court of Appeals for the State of New York will hear oral arguments N.Y. Statewide Coalition of Hisp. Chambers of Comm. v. N.Y.C. Dep’t of Health and Mental Hygiene.  You can watch the debate live—oral arguments will be streamed from the Court of Appeals’ website starting at 2 p.m. E.T. https://www.nycourts.gov/ctapps/The Court’s summary of the case is available here:https://www.nycourts.gov/ctapps/summaries/Daily/2014/June%204.pdf

Monday, May 12, 2014

Pesticides cause illnesses is not new news.

For decades we have known about the hazards of pesticides and yet the headline from 34 minutes ago is "Pesticides Suspected in Spike of Illnesses in Washington State".  Try breathing the air in Fresno and you will understand why so many children there have asthma.  Workers throughout the nation have known about these hazards, complained about them, and pleaded for action.  At best they have received an acknowledgement of their situation.  We now have evidence about the hazards of some pesticides as endocrine disrupting chemicals.  The science is there but what is still missing is the will to act.

Thursday, April 24, 2014

Science will Drive Innovation

El Mundo, one of the most prestigious newspapers in Spain, has a business supplement on innovation and entrepreneurship.  They invited me to write an article on innovation and it was published yesterday.  The original article in English is what follows below.


Innovation in health is being driven by two major changes—the science behind the understanding of health and disease and the expectation that consumers need to be better informed about their own health.

Science has moved us from looking at single causal factors to recognizing that there are many factors that impact on our health and that these factors are connected in ways that we previously were unable to measure. This means that innovation in health will be less about the separate parts of the body (heart, lung, brain) and more about the systems that are key to wellness. Our historic view of microbes as something that must be destroyed has been upended and provides a great example of why a change in focus from single causes and functions to co-dependencies is so important in understanding the mechanics of our health ecosystem.

We know that microbes are found in and outside of every person and for the most part help to keep your body working well. Some aid in digestion while others on the skin actually protect you from having harmful microbes pass through your skin. We need to be able to understand what they do and how to help them do what they need to do. Taking a systems approach to microbes requires us to collect and analyze data on our microbiome by looking at it as one interrelated system. And the solutions and business opportunities are in the products and technologies that work with this system.

At the same time, the vision of health that was defined by longevity is being recalibrated to focus on wellness, activity, and productivity and the quality of those longer years of life. With this new definition comes the demand for more information to be made available to consumers in a meaningful way. The Internet has trained consumers worldwide that information should be available within a few clicks. And this is especially true for the information about our own health and the health of others.

The blossoming area of biometrics and ways that this information can be gathered creates opportunities to market an array of new products. Professional athletes are the earliest beneficiaries of some of the new products that marry biometrics with giving immediate feedback.

For the average weekend fitness warrior there is now wearable technology embedded in clothes, e.g., smart fabrics, that monitor heart rate and pulse and transmit this information through wireless technology. A person can have the information sent to a cell phone or a computer where their every movement and its effect on their body can be studied and monitored. And the opportunities for innovation exist in the devices that are being developed, their use, the analysis of the data, and even in the development of protocols of what happens when there is a breach in a person’s privacy.

Innovation means addressing desires and wants even before a person recognizes there is a need. It is science that will be the key gateway to our future and the successful entrepreneur who will monetize it by new products or services.