BOSTON – At Kyruus's Annual Thought Leadership on Access Symposium, or ATLAS, today, three patient advocates spoke about their experiences as both advocates and patients, and about the ways providers can improve their offerings.

"The important thing when you're looking at this is making a connection," said Martie Carnie, a senior patient experience advisor at Brigham and Women's Hospital. "And what I want to say to leadership here is, not only your providers, but your staff and the people who are running your organization who are going to communicate with new patients, need to be patient centered. They need to understand that when people call in, none of us wants to be calling in under these circumstances."

Carnie was joined by Barry Nelson, another Brigham and Women's patient advisor, and Lindsey Santiago, a development associate at the Accelerated Cure Project for MS, in a panel moderated by Kyruus VP of Clinical Services Karen Conley.

Santiago, who uses crutches to get around, noted that telemedicine has made a huge difference in her experience as a patient and a mom.

"Since mobility is an issue, not having to drive to the doctor, find a place to park, then walk in and get seen for something you don't really need to come in for, is huge," she said. And even in cases where she has ultimately had to come in for an appointment "you feel like you're not wasting your time, and you're not wasting their time."

Carnie also praised telemedicine and telehealth as boons to patients she works with, though she warned that not all of them have taken to it right away.

"Once you get used to using it, telemedicine is really wonderful and very helpful," she said. "But we have to be mindful of educating and supporting the people in that older bracket who aren't used to it."

Carnie and Santiago said that part of what makes telemedicine convenient is off-hours availability, something providers can also offer with their in-person care. Organizations should think about scheduling hours that line up with the availability of patient populations, rather than assume everyone can come in during 9-5 hours.

Nelson added that when organizations make doctors available via email or phone, they need to be sure those doctors are really available, rather than having emails that aren't responded to for many hours.

"A lot of people are not familiar with technology, but some can be coaxed into doing it and some are really good at it," he said. "But again, having email support is great, but if we don't have service level expectations of when someone can expect to hear [back] from someone, you need to communicate that to someone. That helps people with their outcomes."

Panelists offered a few more tips.

Carnie said that hospitals often fail to think about health literacy and ensuring information is presented at a reading level that doesn't make any assumptions about patients (for instance, using "blood work" or "lab" rather than "phlebotomy" on signage).

Nelson said providers should pay special attention to how they treat another doctor's patients when they're subbing in.

"Many times, when you're seen by an alternate doctor, the alternate is not as engaging, they're not as focused, sometimes they don't take the time to review your record," he said.

"Basically, the way that can come across is: 'This person doesn't care about me,'" he explained. "They just want me in and out of here.' So, oftentimes if my doctor's not available, I won't go in until I can see my doctor. Well that doesn't help the whole healthcare system. Because clinicians are busy. And they have a lot of patients. I think it's helpful that when you're seeing someone else's patients, maybe take a couple moments to really get a clear understanding."

Finally, panelists stressed the value that a patient advisory council like there's can have to an organization, helping to design both technologies and processes to maximize patient experience and input.

"To me, that's part of a patient's recovery," Nelson said. "When you feel that someone is working with you, I feel you're going to get the best results and recover as quickly as possible."

Twitter: @JonahComstock
Email the writer: jonah.comstock@himssmedia.com

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