Precision medicine, which customizes treatment for individual patients, is making rapid progress but still faces growing pains, according to a panel discussion at MedCity Converge conference in Philadelphia this week.

Focused on diagnostics and genetic profiling, public interest in the topic has soared thanks to inexpensive commercial services such as 23andMe and Ancestry.com, which have familiarized the public and piqued interest in personal health clues based on genetics.

From the provider perspective, prospects are even more interesting—but also more complicated. "The expansion of home genomic testing has helped open this field," according to Ankur Parikh, DO, medical director of precision medicine at Cancer Treatment Centers of America. "But most of our time is spent on the complexities of aggregating and sharing data and how HIPAA compliance affects our work."

Also See: Precision medicine requires more data, sophisticated analytics

Ankur Parikh, DO
Ankur Parikh, DO

With genetic test costs falling rapidly, the most laborious and costly investments currently arise in capturing and processing data from broader populations using disparate EMRs and other systems of record. "Right now, a lot of this is just stored in PDFs that get passed around but can't be combined easily for aggregation or research," Parikh says.

Pharma, research and payers are all hesitant to share data for reasons that might be proprietary or out of concern over how it is interpreted or used. But when curated information is pushed outward to patients and providers, and it extends life or improves quality, the panelists all agreed "it's a win."

Besides revealing alternative therapies, genome profiles can often lead to evidence based recommendations for off-label use of certain drugs or therapies, that can save lives and money in focusing treatment.

"As a provider you look at how to improve outcomes and reduce cost, and these things should be quite aligned for providers," says Ingo Chakravarty, president and CEO of precision medicine specialist provider Navican. "Next-generation genome sequencing led us to want to look at specific genes that make clinical sense. Can the clinician stop doing one treatment and switch to another?"

Outcomes and cost are at the center of precision medicine, as much or more than any traditional treatment discipline. Parikh says about 90 percent of the work in precision medicine has been devoted to oncology but will soon spread to other disciplines, including cardiology. With some genetic profile results already FDA approved for use in patient care, Parikh says insurance companies are getting more on board and comfortable with processing genetic information.

That's not to say increased complexity doesn't extend to payers as well. Eugean Jiwanmall, senior research officer at Independence Blue Cross says all insurers regularly examine bench research, clinical trials, treatments and many steps in between to validate coverage, "but you can't just take the recommendation for one small cell type of cancer and apply it to another because the outcomes may vary.” As always, all treatment and solution providers want to distinguish themselves for reimbursement, he says.

But the panel was buoyed by the public's general willingness to share their personal health data, provided their records are kept secure and confidential. Oncology patients especially have greater incentive to add to the greater pool of data that will one day lead to regular clinical care.

"The bulk of patients are not that concerned about sharing their data because they have altruistic instincts," says Andrew Norden, MD, chief medical officer at oncology solution provider Cota. "At the same time, it is absolutely required of us that we use industry standard security practices to keep that trust."

Systems need to be architected so patient data remains in the control of the patients. "The data is being generated on their experience, and to the extent that we build an ecosystem that allows patients to keep and manage their data, the more we will collect and the more we will learn," Norden says. "Apple is engaging this creatively, and other traditional vendors could and should participate."