Consider the patient's voice: that highly personal collection of feelings, fears and self-collected health data that goes beyond the clinical record. And at the HIMSS and Healthcare IT News Patient Engagement Summit this week in San Diego, speaker after speaker made it very clear that that voice – or the lack of it in a clinician's chart – could mean the difference between life and death.

"Let's focus on collecting that voice," said Kristina Sheridan, a department head for the non-profit MITRE Corporation, which has developed a patient-facing mobile app just for that purpose.

She should know. A tick bite sustained by her daughter launched a three-year ordeal involving some 30 doctors, 15 different diagnoses and many different treatments and medications, turning the young girl from an honors student and athlete to a special needs student who needed a wheelchair.

Only by collecting all that data – her daughter's emotions and physical condition during these treatments, as well as all the treatment plans distributed but not necessarily shared by those 30 different doctors – was Sheridan able to present a complete patient profile to doctors at New York's Columbia Hospital, who were able to identify the root causes and devise a successful treatment plan.

"People are experts in everyday living," said Sheridan, whose daughter is now a healthy college sophomore. And it's that everyday living that should figure into a doctor's care plan, especially is those patients are dealing with a chronic condition that affects them every day.

The advent of mobile and wearable technology has given the patient more opportunities to contribute to the care plan, and yet healthcare providers are still unwilling or hesitant to make them a part of the process. In this era of consumer-focused healthcare and value over volume, it's important that the provider treat the patient as more than just an obedient subject who're ready and willing to take whatever the doctor prescribes.

"Patients are not in the center to be given things to," Sheridan advised.

At the Carolinas HealthCare System, patients are "the 100 percent experts" on how a care plan affects them, said Hazel Tapp, the health system's associate director of research, who's overseeing a shared decision-making program that makes the doctor-patient dynamic "a meeting of two experts."

Tapp says patients are often put on the defensive when meeting with doctors, and are reluctant to question them or offer their opinions. On average, she said, a doctor will interrupt a patient just 23 seconds into a meeting, making that dynamic event more unsettling.

And that's where doctors are missing out.

A patient who has used the healthcare provider's portal to access all the information at his or her disposal, and one who has used mobile devices and wearables to keep track of physiological details, moods and so-called "life events" in between the doctor's meetings can provide important details that a doctor might miss or overlook.

Doctors rarely have a complete medical record of a patient, and yet they're willing to make diagnoses "in the dark" prescribing medications or scheduling tests that might not be needed, pointed out John Sharp, senior manager for consumer health IT for HIMSS' Personal Connected Health Alliance.

By listening to and collecting data provided by the patient, those doctors might make a better diagnosis that avoids ineffective or wasteful treatment.

Jonathan R. Slotkin, medical director of the Geisinger Health System's "Geisinger in Motion" program, calls patient engagement a "soft science" that isn't taken on a par with hard clinical data or treated with the same deference as quality improvement. But with digital engagement tools and mHealth technology, he anticipates that the patient experience will be as crucial to a health system's success as any other quality improvement measure within 3-5 years.

It's important, he said, "that we make it more of a hard science," and convince doctors that what their patients are feeling and doing outside the medical appointment is a vital component of the care plan.