Let’s get personal: Surfing the big waves in big data and personalized medicine
The use of big data in personalized medicine is a topic that has exploded onto the healthcare scene over the past couple of years. Why? It offers the potential to customize healthcare on a per individual basis.
Personalized medicine is a medical model where doctors sequence an individual’s DNA code or genome to make informed medical decisions on that patient’s health management or treatment options based on his or her genetic diagnosis. This model can be further exploited by aggregating data from multiple genomes into a collection of data sets—known as “big data”—to spot trends in a given population subset. There is an increasing desire from patients, physicians and industries to capitalize on the opportunities of personalized medicine; however, healthcare systems worldwide are wrestling with how to effectively implement big data and measure its value.
On November 13, MaRS Global Leadership hosted a lunch and panel discussion in partnership with the Ontario Genomics Institute and the life sciences and healthcare practice at MaRS on how the innovation waves of big data and personalized medicine are reshaping the patient-care pathway.
Euan Robertson, president and chief operating officer of MaRS, moderated a stimulating discussion between three international thought-leading panellists: Maneesh Juneja, digital health futurist; Dr. Fiona Stewart, chair of the United Kingdom Genetic Testing Network’s Genetic Test Evaluation Working Group; and Phyllis Frosst, senior policy fellow at the Personalized Medicine Coalition.
The “surfing instructors,” so to speak, dove into discussing the consequences of the explosion of new health data and personalized medicine, specifically how they can benefit patients and health outcomes, and what is getting in the way of adoption.
What is the impact and why should we care?
First, personalized medicine can prevent impending illness and death. Fiona explained that if we can see genetic cues or red alarms via genetic diagnosis, then doctors could suggest lifestyle changes and/or opt to take medical measures that may prevent illness or death. Preventative medicine is a great implication for patients, doctors and hospitals alike in terms of improving patient survival outcomes and decreasing hospitalization and costs down the road.
Second, genetic sequencing can allow physicians to validate medical treatment regimens. Phyllis explained that doctors can use the genetic code to predict side effects that certain therapeutics may cause in select individuals and opt to not prescribe those drugs proactively, rather than retrospectively, when it may be too late.
Third, personalized medicine can augment the patient voice in the patient-physician relationship. As Maneesh explained, if patients were to use technology to capture data from their own body it would increase patients’ awareness and involvement in their own health. Patients could then begin describing to doctors their own thoughts about what is happening to their bodies.
What are some of the reservations for implementing personalized medicine?
There is a stigmatism toward genetic sequencing in terms of ownership, privacy and security. It is Maneesh’s belief that every individual should own any data that comes from his or her own body, which would give the patient the choice to share the data or not. This way, an individual could leverage the use of his or her data, for example, in an aggregate study of a rare disease to influence public policy.
Phyllis agreed, making the connection that the information in your medical record belongs to you, as should your genome. The general hope and consensus from the panel was that patients and decision-makers would become more comfortable with the idea of collecting genome data, just as they have with sharing credit card numbers online.
Apart from this, the biggest barriers to adoption are first, a lack of validation that data collection works and that it is used properly for accurate diagnoses; and second, that someone needs to fund it.
Personalized medicine is not without its risks.
Corporations currently exist that sell self-sequencing services or products. Maneesh offered the example of a web-ordered kit that analyzes the genomes of symbiotic microorganisms in your gut, which aims to help users in making informed decisions about how to manage their health and nutrition. However, these services often come without counselling and may incur further anxiety in users. Fiona pointed out that if users are told that they have a 6% risk of developing Alzheimer’s disease and a 3% chance of developing diabetes, they will run to their doctors asking what they should do about it. People are not good at judging gradations of risk.
If big data and personalized medicine are adopted into the healthcare system in Canada the data will have to be tightly controlled, managed and communicated, so that the model improves patient outcomes without inducing more worry and increased hospital visitations.
Maneesh shared an interesting story about what he heard at this year’s Internet of Things forum in Boston. There it was envisioned that, sooner or later, every inanimate object will be able to recognize your genetic code—including that taunting vending machine in your office, which may or may not advise you to skip the chocolate bar today, so that you can skip diabetes tomorrow.