Illustrative Quotes From Caregivers and Providers Regarding Requirements for a Shared Care Plan

 Accessible where they need it“I’ve got my laptop, my tablet, [and] my phone, depending on where I’m at. Especially if I’m at the doctor or if they can’t access [the care plan] for some reason, which they should be able to, then I can from the phone. Then I wouldn’t have to have everything memorized.” (Caregiver 13)“While it needs to connect to our EHR, it also needs to be accessible for other caregivers. Outside hospitals also need to be able to access it because they will see a lot of our kids from Alaska or Montana. They’ll present to an outside emergency room and then get transferred to our hospital. We don’t want to delay their care and things that they could start working on just because they don’t have access to the care plan.” (Complex care provider, provider 11)
 Accessible when they need it“Having a Web-based option where it’s not only readily available but it doesn’t require the family to mention it to the provider so that they know it’s there. It would be great if there were some sort of alert or flag that could come up on a child’s record when he’s admitted to an emergency room. Whether it’s our local one or here. It says, ‘Alert, child has care plan. Click here.’ They don’t have to wait until the parent goes, ‘Oh yeah, by the way, we have a care plan.’ Or stumble across it on encounter 63 of 2000.” (Caregiver 7)“If I could have [access] when she was coming in, gone on the cloud and had a password, and read that discharge summary, I think I would have been more prepared when I saw her, to know what was going on with her.” (PCP, provider 2)
 Find information quickly within the care plan“It would be nice to have things searchable. That’s another reason I started the blog [with his information], because I thought it would be easier to search for things if I need to try to remember something.” (Caregiver 2)“Do I need to wade through to page 37 to find the seizure action plan? If I can type in something, enter, bam, it comes up right away, that would be useful. It would be very easy to come up with, ‘How do I take care of this thing right now?’” (Subspecialist, provider 12)
“I don’t feel like anyone is going to take the time to read a 6-page document, so to serve both purposes [for ED providers versus inpatient providers], there would be a way to have a triage version up front for acute crisis or first meetings. Basically, if you have 5 min or if you have an hour.” (Caregiver 4)“It really depends [on] who it is for. It would be important to have care plans for specific purposes. . .for the family, for the emergency room. The needs of the care plan really vary based on the audience.” (Care coordinator, provider 20)
 Team leader“I would have to say 1 of his rehab doctors [should be the team leader] because that’s where he spent the most time. That was the most recent experience. They had their hands on him. I wouldn’t say his PCP because of my remote situation. In this instance, I would rather his rehab doctors to manage this piece of things. It would have to be a collaboration, of course.” (Caregiver 9)“I like the idea of the [complex care team] because they’re a nice synthesizer of all these different problems and specialties. They have the 10 000-ft view of everything, whereas maybe the gastrointestinal specialists and the sleep doctor, maybe they don’t see the whole picture as well. The [complex care team] knows everything that’s going on with him, so I feel confident that they have the most up-to-date information, because they are in contact with this family so much.” (Inpatient pediatric resident, provider 1)
 Contributors“[My role is] to check and make sure that everything’s correct. [And] when I need to add something, to make sure that’s correct as well and up-to-date. I think it needs to be checked, I would say at least once a month or depending on your child’s health. If you’re having some problems, then check it as often as you can and make sure that it’s okay.” (Caregiver 16)“Maybe with cloud based, if the pulmonologist is changing the plan and we made it easy enough to change within the cloud-based system, they could go in and update it, and they wouldn’t have to update every section. They could just update their particular problem, which would mainly allow [the care plans] to be more up-to-date.” (Complex care provider, provider 11)
 HIT system“The [doctor] updates what medication he’s on, what dosage he’s on, and they change something so that goes into the system, and it goes to part of the hospital that updates the care plan. They get an alert, and then updates have to be made within a certain time frame.” (Caregiver 5)“I’d like to not have to have a whole lot of awareness of [the care plans] because what I’m doing as part of my clinical routine care and my discussion with parents is automatically populating into it. That is the most ideal basis. On a more realistic basis, I would say I’d like to be able to enter in the information I need to and have it alert the people who it potentially touches every time I’ve made an update. Likewise, if somebody else makes an update that touches something to do with seizures, it pings me to let me know.” (Subspecialist, provider 12)
 Messaging system“It would be good for the [home dietician] and [hospital dietician] to be able to communicate that back and forth about the best feeding plan. That would probably be easier, too, because I know that different providers don’t talk with certain in-home people. There’s a communication barrier there. It would be easy to see the changes that a doctor made and why, so that everybody can see what’s been changed, why, [and] what the plan is, so that they have an understanding, too.” (Caregiver 11)“The way I envision it is that the communication is all in 1 place so other team members could see the communications that they wanted to, or you could include other team members in the communications. That way you’re not reinventing the wheel by trying to communicate different ways with different people or cc’ing people in e-mails.” (PCP, provider 5)
 Balance between access versus security“Who’s going to be accessing it, when, and for what purpose? Is there some piece that is public domain? And if I know that information, I can find this person quickly, and the rest of it is password protected.” (Caregiver 1)“Obviously it needs to be HIPAA compliant and password protected, but it can’t be 10 clicks away. You can’t have to go to a new Web site that you have to update your login every 2 months.” (ED provider, provider 10)
 Control over permission settings“I would probably like it to be similar to how Facebook does their privacy, where you can say, ‘I want everybody at [hospital 1] to be able to access this.’ Or ‘I only want [child’s] direct care providers to access this.’ Or ‘I only want [child’s] immediate medical team for this admission to access this.’ Then give the families those options.” (Caregiver 7)“The ideal piece of EHRs is that parents can go in and say school nurse A can look at my kid’s record, but school teacher B cannot. . .it’s about [the patient]. They should control who has access.” (School nurse, provider 17)