JENN: Hi, this is Jenn from New Hampshire Family Voices. Today I’m joined by Sylvia Pelletier, Project Director for the New Hampshire Medical Home Project, and we’re going to talk about medical home. Welcome Sylvia. Can you tell me what medical home means?
SYLVIA: Sure. The term “medical home” can be really confusing. It’s really a concept of how primary care is supposed to be delivered. So when you’re asked if you or your child has a medical home, the question they’re really asking you is does your primary care practice act the way a medical home is supposed to? So what does that actually mean? They want to know is your care coordinated across all parts of the healthcare system? Do you have help accessing the services you need? Are medical and nonmedical needs of the patient being considered and addressed? In addition, is care comprehensive? And what does that mean? Does your care address acute illnesses and routine preventative care? Is it continuous? Does your child see the same provider every time? And if not, does the provider who you have to see know something about your child? You know, is the care you receive compassionate? Is it provided in a manner that shows concern for the wellbeing of the patient and the whole family? Is care family centered? Are you, as the patient or the parent of the patient, a true partner in their care? Are your concerns recognized as a priority? Are you given the information you need to make decisions? Also, is your care accessible? That means more than can I get in the building? It means are longer appointments, or after-hours, or Saturday appointments available? Is there some means of communicating with the provider through a portal or email, some other way other than just the phone?
In an ideal world you would have answered yes to all of those questions. But if you answered yes to most, you probably have a medical home.
JENN: Can you tell me where the term “medical home” came from?
SYLVIA: The American Academy of Pediatrics first used the term in 1967, and it was specifically in regard to children with special healthcare needs. There was a recognition that such children used many providers and services, and as such no one had a complete picture of the child. So the American Academy of Pediatrics took a position that a central place, and they called it a medical home, was vital to ensure that all needs were met. At that time, it was a really a place to keep all the records about that child. The term has expanded since that time to include quality measures, and to be applied across all ages, but its origin was in pediatrics, and it was in pediatrics specifically for kids with special healthcare needs.
JENN: If I spend more time with my child’s specialist can they be my child’s medical home?
SYLVIA: We hear this one from families quite a bit, particularly those who have children whose chronic or acute illnesses have them see a specialist far more often than they see the pediatrician. It’s natural for us as parents to develop a connection to those providers, but the focus for specialists tends to be on one issue, and maybe on how that one issue impacts the child, not on the whole child, that’s really the role of the primary care. So we’ve seen some movement recently towards specialists being recognized as medical homes. It’s going to remain to be seen whether they can deliver care in a whole child model, which is really critical to being a medical home.
You know, as an example for a child with epilepsy, the child’s neurologist will be the provider who is relied on most when struggling to get seizures under control. Seizures are really the focus of those visits. I mean little if any time is going to be devoted to talking about other issues that may be happening, such as maybe developmental or learning delays, behavioral issues, or nutrition concerns, certainly not something like he has frequent ear infections. But at the pediatrician’s office you can discuss all of those things, including how seizure management is going, and they’re going to look at your whole child.
JENN: So what does medical home mean to me as a parent?
SYLVIA: I think simply help, you know, envision what it would mean to you if you had a true partner in your child’s care. You know, this is someone who you can talk about all of your concerns with, not just your medical, but your learning or developmental concerns about your child. They’re someone who if they don’t know the answer is going to work with you to find one. I mean someone who is going to think about all of the moving parts that are impacting your child, and your life, and help you to come up with a plan that’s focused on your priorities.
As an example, when our son was little he was undergoing chemotherapy, and our pediatrician and I discussed his speech delays. You know, our pediatrician recognized that he probably should make a referral to Early Supports and Services, but that that probably could wait until he finished treatment. At that time really for us chemotherapy and seizure control were priority one. In recognition of that he provided some tips on how I could work with my child to support his speech development. He really validated that my efforts and priorities were important, and he identified what the next step would be when we’re ready to take it.
JENN: Why am I told that I need a medical home for my child?
SYLVIA: Well, I think it’s because they work. It’s a funny thing about medical homes, they really work. We know that children with special healthcare needs who receive care in them have better health outcomes. They spend less time in the emergency room at the hospital. And, you know, why is that? Because coordinated care is proactive. You know, it’s not reactive. We’re not always just, you know, responding to the new emergent issue of the day. You know, our care is provided with a plan that’s in place. Someone’s looking at what needs may happen down the line based on the nature of what my child needs. So if mobility is an issue, we’re gonna talk about the new wheelchair or lift system before he outgrows his wheelchair, or before I can’t lift him anymore, and, you know, our follow up appointments with specialists are going to be arranged before he runs out of his medication, you know, that might then run the risk of going without it.
You know, of course, we have acute issues, and our kids with special healthcare needs have some things that we just can’t prevent or anticipate. I mean it just happens for all of us, but when they happen when we have a medical home we have a system in place, we have the information we need, and we have other providers lined up to respond appropriately to those things.
And this touches on another issue that’s really important about medical homes. It’s why healthcare transition is beginning to be talked about and why it’s recognized as so important, particularly for youth with special healthcare needs. We know that if youth maintain a connection to a medical home they have better health. If we plan for a smooth transition from a pediatric provider, and I mean by that both primary and speciality providers, we’re less likely to have gaps in care. And we know that gaps in care lead to problems getting medical on time, having breakthrough acute issues, et cetera. So a medical home is really important for our kids, regardless of their age, if we want to help to keep them well.
JENN: What are the biggest challenges regarding medical home?
SYLVIA: I think the biggest one is no one knows what it means. Few people understand also that they have a right to expect this kind of care from primary care. I think many of us stil have a go to the doctor, ask the question, do what they tell us, kind of attitude. We don’t think of ourselves as true partners in this relationship. And I don’t think we’re quite sure how to do that, how do we ask for a different kind of relationship with our provider in order to get our needs met.
JENN: This all sounds really great. How do I get a medical home?
SYLVIA: Well, there are a number of practices in the state that are recognized as medical homes. Some external entity has looked at them and said “Hey, you act like a medical home.” But as patient advocates we recognize this is only one part of it. If a patient doesn’t identify that their experience and care feels like a medical home doesn’t really matter so much if someone else says so, right? So I think for us, as advocates and as patients, the first step is giving ourselves permission to expect something different from our relationship with our provider’s office, and then ask questions about how we make it work better if it’s not working better for us.
You know, on a one to one level I can talk to my provider directly about my concerns. On a system level there might be opportunities to improve the experience for all families who go there. I can ask my practice if they have a Patient Family Advisory Council, or if they have quality improvement activities that require patient or family representation, and if they do I can ask how I can get involved.
At New Hampshire Family Voices we know what a difference a good medical home makes in the lives of patients and families. We also believe that patients and families have a unique perspective as users of healthcare, and as such they play a critical role in helping practices to improve so they can be the best medical homes they can be.
JENN: Thank you, Sylvia. That was very helpful. If you would like more information, please call New Hampshire Family Voices at 271-4525, and be on the lookout for more podcasts.