Care Triad

Patients and parents as partners – part II

What if hospitals worked together to improve the care they deliver to patients with a particular disease (instead of competing with each other)? What if these hospitals considered patients and families their teachers and members of their teams? I’ve written before about the magic of the ImproveCareNow (ICN) network but even I am amazed at how quickly the interest in patients and parents as partners has grown within the network.

ICN is a group of 70 medical centers (the graphic to the left says 68 because the network is growing so fast that it is hard to keep up!) that take care of kids with inflammatory bowel disease (IBD). IBD is a chronic medical problem of the gut that includes both ulcerative colitis and Crohn’s disease. Kids who have IBD will have it for the rest of their lives so it is important to come up with the best ways to keep them healthy.

The ICN medical centers (referred to as care centers) meet face to face in Chicago for Learning Sessions twice a year (I’ve just returned from the latest meeting). They also learn from each other through regular webinars and by sharing with each other on an online platform called the ICN Exchange. One care center might be thinking about ways to improve the number of patients coming back for their 6 month check-ups and can ask the other care centers for advice by posting in one of the forums on the Exchange. Or a care center can post a letter on the Exchange that they have developed to send to new patients to explain what it means to be a part of ICN. Other centers can download the letter and adapt it for their own use – in other words they can “steal shamelessly”.

But what was was most notable about the recent Learning Session was the desire on the part of care centers to learn about the best ways to involve patients and parents in their work. Care centers are realizing that they need to work together with patients and families in order to deliver the best possible care. This is called “co-creation” and here are just a few of the examples I saw in action at the Learning Session:

• New ICN care teams said that one of their main goals was to get help involving patients and families in their work
• A group of parents and patients developed and taught a session about how to explain ICN to patients and families (and when to do so). The session was extremely well attended and well received.
• A session on shared decision making (when family members work with the care team to make the best care decision for the individual patient) included patient and parent speakers and was so popular that only a handful of the many questions could be addressed during the session. One of the key shared decision making tools for IBD care that was discussed during the session was started by a parent!

This great video about ICN was introduced at the Learning Session and says it all: