September 18, 2019

Getting to the Right Answer – The Parents’ Voice in Primary Care

How do you effectively engage patients in their care in a way that meets their needs in and outside of the clinical setting? This is a key question the primary care teams at Partners HealthCare are asking themselves as they work to define the next wave of priorities in their advanced primary care strategy. Perhaps the best way to answer this complex question is to ask patients and their families directly.

At Affiliated Pediatric Practices (APP), an integrated group of primary care practices based in the greater Boston and Southeastern Massachusetts areas and aligned to the Partners Community Physicians Organization, patients and their families have been involved in the decision making and feedback process for over a decade.

In 2006, APP started a Parent Advisory Council, a formal group convened to provide moms and dads the opportunity to voice their opinions on a wide variety of clinical and non-clinical initiatives. Currently, the PAC meets 3-4 times a year and is comprised of at least two parents from each of the 16 APP practices, along with pediatric physicians, nurses, and administrative staff.

“The crux of it is, the doctors and administrators don’t always know all the answers and they often don’t even know what the right questions are to ask,” says Dr. Bornstein, a pediatrician at Middleboro Pediatrics. “It’s very easy to fall into the false belief that those of us in the profession know what the ‘right’ idea is, but patients may think otherwise.”

Marie, who has been a member of the APP Parent Advisory Council since its inception, is the mother of two boys diagnosed on the autism spectrum. As her children have grown, she’s discussed everything from over the counter medication dosing instructions for new parents; to accommodations for children with special needs to make them feel more comfortable at appointments; to warning signs parents of teens should look out for regarding substance use issues, depression, and other mental health concerns.

“Having a big group offers different perspectives,” says Marie. “When I started, I used to talk about what it was like having little kids and managing several kids at one time. But now, I share what it’s like having teenagers.”

Patient Perspectives and Priorities

The APP Parent Advisory Council often generates ideas for patient education materials and then works together to refine the content, format, and language in a way that is most useful and easiest to understand for families and patients. For example, the group recently helped to develop a document called “Making the Most of your Pediatric Visit,” a tip sheet on things to do before and during a visit to make the appointment as productive as possible. While reviewing the initial draft, the group pointed out that some of the language seemed to scold parents rather than inform them, and that the chosen imagery –a stop sign with black clouds in the background—was foreboding rather than reassuring.

“It’s been very interesting. At APP, we’re almost all parents ourselves and we think we know as parents what we’re talking about,” says Chris Schneider, Executive Director at APP. “But we always get different perspectives from the parents at these meetings and each time we think ‘Oh my gosh, I didn’t think about that!’ Including parents’ perspectives really makes our practices better.”

The council also leaves time in their meetings for open discussions. Recent topics have included vaping, the HPV vaccine, approaching “anti-vaccine” parents, and the new electronic health record/patient portal.

“It’s valuable to tell them from the parent point of view, hey, if there’s paperwork I can fill out before I get there so I’m not juggling paperwork, a sick kid, and another kid that I had to bring with me, that would be great,” says Marie. “Feedback like that has helped them put certain forms online so you can fill them out before you get to the visit.”

Suggestions Big and Small

The Management Team at APP makes sure what they’ve learned at the Parent Advisory Council meetings is shared across APP practices. “We pick out some of the more important points from the meeting and we put them in a newsletter for our practice administrators, nurse managers, and medical directors, as well as the APP Board of Managers,” says Schneider.

The council is always looking for new parents to get involved so they can continue to get diverse feedback from all age groups and stay up to date on the most pressing topics.

“Parents are appreciative that they have a voice in terms of what kind of care their offices and their network are trying to provide,” says Dr. Bornstein. “That voice is heard, it’s acted upon, and tangible results come out of that.”

He shares an anecdote from years ago, before the Parent Advisory Council had started, when Middleboro Pediatrics was constructing a new office building. While redesigning the new practice, the staff were completely focused on building a more streamlined, innovative clinic for their patients. After surveying the parents to get their thoughts on the new practice, the number one piece of feedback surprised the staff.

“Make sure the parking lot is big enough!” Dr. Bornstein says with a laugh. “It had absolutely nothing to do with direct medical care, but it clearly was meaningful for the patient experience. It just speaks to the things that you prioritize as a doctor may not be as important to your patient. Getting feedback goes a long way to addressing the real priorities patients and their families are thinking about.”

Want to get involved or learn more about the APP Parent Advisory Council? Click here. 

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