In New York, Making it Easier for Patients to Say “Yes” to Sharing Their Health Data

July 26, 2016
For HealthlinkNY, a “Just Say Yes” campaign is increasing patient education—and consent

Officials of HealthlinkNY, a Qualified Entity (QE), funded by the New York State Department of Health, and operator of the health information exchange (HIE) in the southern tier of New York and the Hudson Valley, attest that New York state now has the has the nation’s largest health information network—one that is capable of connecting every hospital, physician group, medical laboratory, and healthcare provider so they can share patient records and improve care.

But, HealthlinkNY senior executives will also admit that its success is riding on one thing: getting patients to just say “yes” to allow providers to share said data. “Yes” means signing a consent form, because different provider organizations can’t share electronic patient data with each other without the patient’s written consent. Christina Galanis, president and CEO of HealthlinkNY, notes that New York is one of about 10 states in the country that has this form of “opt-in” consent for its HIE, primarily because it doesn’t restrict 42 CFR Part 2 data, as regulated by the Substance Abuse and Mental Health Services Administration, from being shared. “Because of that, we have federal laws that we have to adhere to which require affirmative consent from the patient to the provider to withdraw their data. I always use the banking analogy to explain this. We don’t need consent to deposit the data, but for a withdrawal of the data, consent from patients is needed,” she says.

But now, patients can go to the consent page on HealthlinkNY’s website to start the approval process, making it the first organization in New York state to offer patients downloadable consent forms customized for each of their participating providers, its officials say.  Consumers who download consent forms will see they have two choices: they can either give their consent or deny their consent to make their records available at any time, even in a medical emergency. Patients do need to submit the consent forms to their providers, and New York state requires they submit a separate consent form to every different provider organization they see, however. “Unless you specifically deny consent, emergency physicians and other clinicians are allowed to access your records in a case where you are non-responsive and unable to give consent,” Galanis says. “In reality, very few people deny consent—only about 6 percent— because wouldn’t you want the person who treats you to have all the information he or she could possibly have?”

Christina Galanis

For getting patient consent, Galanis says that the HIE, which serves as the region’s access point to the Statewide Health Information Network of New York (SHIN-NY), works with its data participants, including hospitals, doctors’ offices, county health departments, long term nursing facilities, and others, who are all contributing and want to access patient data. Patients at these various facilities are supposed to be presented with a consent form, brochure, FAQ sheet, as well as online education and videos to help them understand the value of giving consent. “But, it’s really up to that frontline person, whether it’s the triage nurse in the ER or the receptionist in the doctor’s office to give you the paper,” Galanis says. “We have found that it doesn’t happen all the time, at least to our satisfaction. We did testing of that and said we need to figure out another way.”

Enter the “Just Say Yes” campaign from HealthlinkNY, which started out as a means to support the activities of its participant organizations in acquiring consent and building up the name in the Hudson Valley. The second phase of the operation was making available all of the consent forms. Galanis envisions a day when patients print out the forms and waive the paper in the air saying they want to give consent to allow providers to share their data, rather than waiting to be asked. “That’s my idea, and I have this image of hordes of patients doing this,” she says. While that dream has yet to become a true reality, HealthlinkNY has witnessed a 13 percent increase of affirmative consent in the first month since the new strategy launched, compared to an increase of about 3 to 4 percent per month that was occurring before the campaign, Galanis notes.  

Since busy providers are often swamped with things to do and can thus easily overlook giving consent forms to patients, Galanis wanted to get out in front of the issue and go directly to the patients rather than to the provider’s office. “We want to get the patient educated where they understand the value of giving consent and sharing records,” she says. “That’s one of the reasons we did what we did to try to streamline the process. If you look across the state, we are running about 95 percent affirmative [consent] after 11 years of doing this. Patients say yes a whole lot more than they say no.”

What’s more, another reason why almost all consumers give their consent is they are confident their data will be protected, Galanis says. “All data is encrypted. No temporary passwords are issued. We set different levels of access within a medical practice, so clerical staff see only administrative information,” she says. “Also, patients can request a report of who has viewed their records through HealthlinkNY. Everything we do is designed to keep patient information safe and secure.”

Galanis, who has been in a director role at HealthlinkNY for about 12 years, emphasizes further that the patient education piece is critically important to the opt-in HIE model. She feels that patients need to have the right to choose where their data goes, noting that even if the patient chooses “deny,” that’s something the organization has to comply with. But for this choice to be made, patients need to be informed and educated up front about the policy of the HIE, and where their data might be going. Then, choices will become easier and trust will be gained.

“I know that you have to go to the patient first, and the patient has to be educated,” Galanis says. “It’s about making the patient aware and educated at the front end, which [increases] patients having trust in the system as well, knowing that it’s not easy to get their data—they have to give consent. And they can withdraw at any time, it’s not permanent,” she adds. “Also, they don’t have to say yes to the whole HIE, but rather they can choose by organization, or only in case of emergency. Maybe they only want their family practice doctor to get in, but for hospitals, only if they are in their ER. It’s their choice.”