As an advisor to a company working in the field of digital health, it was with some uncertainty that I attended my first meeting on Precision Medicine ( Personalized or Individualized Medicine) back in 2013. The focus then was on the significant advances that have occurred in the field of genomics and how these might change the way we practice medicine such as the promise of prevention and early detection of cancers and being able to tailor the treatment to the individual, based on the genetic makeup or knowing which drug to use to treat chronic conditions such as hypertension and diabetes.
In the last several years the interest in this field has dramatically increased, helped along by Precision Medicine Initiative launched by President Obama. The focus of those working in this field continues to be on the scientific advances in genomics and how these can be applied to patient care. This focus is appropriate and necessary if the promise of Precision Medicine is to be delivered.
However it has also become very clear to me over the last few years that the patient (or person) should not be lost in this drive for new technology. I am reminded of a meeting I attended some years ago on quality improvement in healthcare, and heard Don Berwick speak about the 20th century being the period of scientific and technological advances with the 21st century being one for improvement in quality and a systems approach to improving healthcare. Advances in genomics will be essential to improve the effectiveness of healthcare provided ( at what cost, is not clear), but it must be patient-centered too.
Just this week an elderly gentleman came to see me following his recent treatment for melanoma. I have cared for him for nearly 18 yrs and seen him through four previous cancer diagnoses, all successfully treated. The melanoma on his scalp that he detected and showed me a few months ago, had been successfully removed (according to best practice guidelines) by his plastic surgeon. He had been cured for a fifth time. However he was not happy. The extensive skin graft required to cover the defect in his scalp from the cancer excision was disfiguring. He was so upset at his appearance that he felt he would not have had the treatment had he been aware of what the appearance was going to be.
There are many other aspects of patients and their lives that we need to better understand if we are to realize the quality improvements that precision medicine hopes to deliver. Aspects of the patients behaviors, good and bad, that impact not only on their risk of developing disease, but also on their successful treatment and ultimate recovery. The physical, emotional, and cultural environment that people live their lives in also impact greatly on their risks and their response to treatment.
And this is where the link between Precision Medicine and mobile platforms that create patient communities, exists. The ubiquity of smartphones, the advances in sensing technologies and the creation of these patient communities can help to fill that gap in our understanding of patients and their lives. We are at the point of being able to collect data on patients that we have never had before. Data, which will provide an understanding of the whole person, that previously only existed in the heads of those trusted family physicians who cared for individuals from “cradle to grave”. Data that can be collected passively as people go about living their lives, rather than in the brief moments of time that they visit their physicians.
Atul Gawande, writing about Oliver Sacks in the New Yorker, said "He compared the modern clinical practitioner to the man who mistook his wife for a hat—able to register many details yet still miss the person entirely. “To restore the human subject at the centre—the suffering, afflicted, fighting, human subject—we must deepen a case history to a narrative or tale.”
Digital health platforms and the data that they can potentially obtain will provide today’s practitioners of Precision Medicine with the narrative or tale of the person upon which the wonderful scientific advances in genomics can be applied.