Medical Informatics: Patient engagement, integrated systems are formula for better care
BOSTON--The convergence of technological advances, breakthrough science and health IT reform is setting the stage for a new era in healthcare. The challenges of creating a more integrated, patient-centric system were explored at length during the keynote panel at the Medical World Informatics conference on April 8.
“How many patients do we have in the room?” Mark Davies, MD, executive medical director, Health and Social Care Information Centre, asked a room of medical informatics professionals to some laughter. “Sometimes we treat them like another species.”
A profound professional and public cultural shift to move information into the hands of patients is critical to building a more connected healthcare system. “We are unlikely to meet sustainability and productivity challenges if patients continue to be passive consumers of care rather than experts in their own condition. We have to have an adult relationship with the people we help,” Davies said.
Lonny Reisman, MD, senior VP and CMO at Aetna, noted the reluctance of providers to share information with patients, for liability reasons and also not to interpret the record. However, he said millions of downloads per month from patients show their interest and enthusiasm in accessing their data.
Reisman said pushing back information to patients is critical. The aggregation, analysis and assimilation of longitudinal data for the patient are part of an “umbrella” to better care, he said.
Exchanging information as a whole is not just an added bonus to care delivery, but fundamental to the work of medical professionals. “We need to take the initiative to clearly articulate how the failure to share information across systems kills people. This is not icing on the cake. This is what we fundamentally need to do to treat them,” said Davies.
Echoing that sentiment, John Halamka, MD, CIO of Beth Israel Deaconess Medical Center, said a system fragmented policy-wise inhibits data connectedness. Some states proactively pursue data sharing while others, like New Hampshire, have “an allergy” to collect data for any kind of purpose, he said. Closing the gaps in patient data coordination requires focus on new data sharing policies that take into account patient security and privacy. In addition to better coordination in the U.S., a learning healthcare system really should extend across the globe, he added.
Halamka also encouraged entrepreneurs to build apps that provide value as a way to engage patients in their healthcare. “We need apps that offer value to patients and families,” he said.
A connected system also means that professionals across different disciplines share information. Sandy Aronson, executive director, IT at Partners HealthCare Center for Personalized Genetic Medicine, said that lab geneticists running a sequence often understand the clinical implications of the results, but this information is far removed from the clinical practice where the treatment takes place.
“Part of the challenge is making sure different expertise is well connected to each other from a knowledge development perspective, so that can be used by the healthcare system,” Aronson said.
From his perspective, genetics data also should be shared among families to improve diagnosis speed and accuracy. “We need family members to share genetic information with each other. When you sequence your own genome, you are getting information about family members,” he said.