wh_precision_medicine_header2“The future of precision medicine will enable health care providers to tailor treatment and prevention strategies to people’s unique characteristics, including their genome sequence, microbiome composition, health history, lifestyle, and diet.”

 –The Precision Medicine Initiative, WhiteHouse.gov

One of the signature initiatives of the Obama administration’s focus on healthcare is passing an exciting milestone this week. The White House is hosting an exclusive group of leaders from the Federal government, the private sector, academia, research organizations and patient advocacy groups to discuss next steps in the President’s Precision Medicine Initiative. The goal of this summit is to bring together the individual views of the attendees and to foster collaboration from these varied stakeholders in shaping the future of health and medicine.

As a result of my ongoing work in these spaces, I’m honored and excited to have received an invitation to participate in the Summit tomorrow (Thursday the 25th) in Washington, D.C. (You can tune in to watch the livestream here.)

The Precision Medicine Initiative aims to enable a new era of medicine through research, technology, and policies that empower patients, researchers, and providers to work together toward development of individualized treatments. And the reason the Precision Medicine Initiative is important is because most medical treatments are designed for the “average patient” – so treatments and devices are designed as “one-size-fits-all”, which often means it doesn’t work well for many. Precision medicine takes into account individual differences, whether that’s genes, environments, lifestyles, etc. – and as a result, clinicians have tools to better understand the complex mechanisms underlying health, disease, or a condition, and can better predict (and design!) which treatments will be most effective.

All of this is a direct parallel to the work we’re doing as the MDigitalLife team with W2O Group: our strategic analytics work is the “precision medicine” approach to understanding the nuances and intersections of healthcare stakeholders online to enable the development of targeted, effective strategies. Without this approach of understanding the stakeholder groups, and where and how they’re engaged as well as the evolution of their behaviors, our clients would otherwise have campaigns and strategies that would be generalized and less impactful than we know is possible.

At the Summit, I’m looking forward to bringing this perspective to the conversation, along with a focus around two key areas, based on my experience as a patient researcher and seeing the state of the current healthcare ecosystem:

  • One objective of the PMI is the creation of a national research cohort, to enable patients to donate their data and for “qualified researchers” to access and utilize the data. It’s important to make sure that patients can also access the data, for personal use and/or for their own research. There is a variety of examples of patients driving powerful, life-changing research (like #OpenAPS), and reducing barriers to access data will lead the way for further innovations, improvements, and cross-stakeholder collaboration.
  • Another focus of the PMI is regulatory modernization. This may have originally been intended to focus on new areas such as genomic sequencing, but given the growing volume of patient and individual (non-traditional) researchers building new solutions and identifying new uses for devices, we also need to modernize the regulatory pathways to deal with non-traditional researchers to access Investigational Device Exemptions and other regulatory processes.

This is the first of two posts – I’ll follow up with a report from the Summit and share some of the highlights from the event if you’re not able to tune in online. But I’d like to hear from you – what do you hope to see from the Precision Medicine Initiative? How are you, as an individual, or your organization involved in this work? And if there’s anything you’d like me to pay attention to at the event – make sure to tweet me (@DanaMLewis) – to let me know.