becoming PART OF THE CARE TEAM

partnering with care teams

Some of my most rewarding office visits have been when I’ve found myself in an actual dialogue with my care team. Over the years, my daughter’s physicians have come to expect that I will come prepared with thoughtful and practical questions. In return, they come to me with new research, tidbits from the latest conference they attended, and more.

If you have real concerns about your child’s treatment - or if you are looking for new ways to deepen your knowledge base or connect with your care team - consider asking one or more of the below questions. If you are worried about taking up too much time, just remember that hospital systems are looking to improve the engagement of patients and families. Open dialogue is one way that care teams can support this.

Here are some of my favorite conversation starters:

• What new research opportunities are out there?

• What’s coming down the drug pipeline?

• What was the biggest buzz at this year’s specialty conference?

• How do you want me to communicate with you in between appointments?

• How can we work together to make this more manageable?

• How can we get better at….?

• Can you help me understand why…?

• What else can I be doing to…?

• What do I need to look out for with respect to…?

• If you were in my shoes, what would you do?

• Let me make sure I’m tracking with you. Here’s what I heard…

advocating for family-centered care

Many hospital systems in the U.S. are working to deliver “family-centered care.” This approach puts patients and families at the center of the care team. What does this look like in practice? Allowing ample time for a family’s questions. Listening respectfully to a family’s concerns. Encouraging a family to be a part of the decision-making process wherever appropriate. All of these are good applications of family-centered care.

Many hospitals invite families to help them improve the experience of care. Completing a phone or email survey after an office visit or hospital stay is one way to provide feedback. Another way is to join a Family Advisory Council, a group of families who partner with hospital leadership to provide feedback and create change.

As a Family Advisory Council participant, you can:

• Provide feedback on hospital communication materials

• Develop parent mentoring programs

• Compile helpful resources for newly diagnosed families

• Participate in hospital quality improvement efforts

• Elevate your concerns (or those you’ve heard from other families)

• And so much more!

my experience on a family advisory council

Within my first few months of participating on an advisory council at Riley Children’s Hospital, I was able to address one of my biggest pet peeves - lack of protective mask stations in the parking garages. I was tired of getting into a crowded elevator with my daughter and riding several floors before I could access a protective mask for her. If you’ve read my blogs, you know how germs can make me crazy!

As a council member, I sat in the same room with hospital leaders and elevated my concern. Within weeks, mask stations were at the elevator banks on every floor of the parking garage. In a world where I often feel an immense lack of control, the opportunity to create change felt amazing.

Check out the below video to learn more about my experiences!