A New Journey To The Center

Most people remember Jules Verne’s best-selling science fiction novel, and the films it inspired, about a journey to the center of the earth filled with “natural hazards.”

As a society, we have embarked on an equally thrilling and far more science-based journey in which we seek to place the patient at the center of healthcare and our health care system.

Personalized medicine can be seen as the perfect ‘vehicle’ to that patient-focused core of care, fueled by the specificity of molecular diagnostics and targeted therapeutics.

So, on the 10th anniversary of the Personalized Medicine Conference, and the 13th anniversary of the completion of the Human Genome Project, how are we doing?

Well, there is certainly much talk about the journey to the ‘patient at the center’, reflected in countless health-focused initiatives that start with “My” or “i.” There are genomic sequencing companies that serve consumers, as well as a growing roster of readily-available diagnostic tests to assess an individual’s genomic profile. Leading cancer centers are customizing treatment based on molecular testing of tumors. Patient advocacy groups, in some cases funded by the Patient-Centered Outcomes Research Institute which was created by the Affordable Care Act, are collecting data directly from patients, promising in return to conduct research to answer the questions of greatest interest to patients.

So far, so good. But while such innovation is intended to foster the patient-centric paradigm, the national dialogue is still largely about what is being done ‘for’ rather than ‘with’ patients…a turn of phrase that perhaps reflects a deeper and more patronizing attitude towards patients that remains at the heart of our health care system.

It still seems that:

  • Many of the digital tools that have been developed are designed to help people stay healthy. More tools are needed to support patients already grappling with chronic illnesses to help them get healthy.
  • There are still precious few tools available that start with clear cut definitions and measures of value as seen through patients’ eyes, to help them express their own judgment of value and individual preference.
  • It is still hugely difficult for patients to obtain and use or share their electronic health records from healthcare providers.
  • And the patient voice is still a ‘token’ or afterthought in many policy, regulatory and reimbursements decisions.

We have certainly come miles in the quest for personalized medicine, and we owe a huge debt to the cadre of dedicated scientists, clinicians and entrepreneurs who have made progress possible. However, our journey to a health care system with the patient at the center remains a long and often lonely road.

We need to do better. We can do better.

The Personalized Medicine Conference is an annual two-day event co-hosted and presented by Partners HealthCare Personalized Medicine, Harvard Business School, and Harvard Medical School in association with the American Association for Cancer Research and Personalized Medicine Coalition.

This year’s 10th Annual Personalized Medicine Conference will be held in Boston on November 12-13. For more information, please visit http://www.personalizedmedicineconference.org.