Children’s Hospitals and Clinics of Minnesota has been on the journey of patient and family engagement for over 20 years. The System’s progressive understanding of the importance of partnership with patient families is a part of many strategic decisions. Across the country, Children’s Minnesota is often looked to for advice, guidance, and inspiration for family engagement efforts.

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Tessa Billman, Patient-Family Centered Care Coordinator, leads much of the daily and strategic work for family engagement efforts across the system. The Families as Partners Program is located within Child and Family services, which reports to the system’s Chief Nursing Officer.

Most recently, Children’s Minnesota has developed a new Mission and Goal Statement: “We champion the health needs of children and families. We are committed to improving children’s health by providing the highest quality, family-centered care, advanced through research and education. Our goal is to be ever family’s essential partner in raising healthier children.”

“Children’s Minnesota emphasizes their partnership with families is about ‘doing with’ rather than ‘doing for.’ If decisions are being made that impact patient families, then patient families need to be at the table.”

Importantly, Children’s Family Advisory Council provided critical feedback on The Children’s Way Values, which is the care philosophy that Children’s Minnesota espouses. From its original concept, these Values were dramatically changed based on the Family Advisory Council’s feedback. What a great example of engagement in action!

There are a number of leading ways that Children’s Minnesota promotes family engagement:

Family Advisors: the most active and largest group of partners. Families act:

  • as partners with staff
  • on various committees (design teams, improvement teams, experience teams, research and clinical trial design, focus groups, share stories for fundraisers etc.). Particularly:
    • families sit on the Children’s Minnesota Quality and Safety Committee; this is by
    • families on the Education and Research Committee, IRB, Ethics Committee
  • other areas include: Art Selection, Medical Home teams, Bereavement Advisory Team
  • specialized Cystic Fibrosis Family Council
  • the Minneapolis Neonatal Intensive Care Unit has an Experience Team comprised of alumni families
  • other ad hoc Committee work (for example, visitor guidelines during flu season as well as conference planning)

Youth Advisory Council: see Children’s Minnesota website

Family Advisory Council: see Family Advisory Council website

  • One meeting per month, now for over for 3 years
  • Set of guidelines and bylaws the council closely follows
  • Try to get broad representation of all families (diversity, campus use, experienced loss, type of use); goal to improve all care delivery. Comprised of 21 families.

Family-to- Family Mentoring: for the Neonatal Intensive Care and Cardiovascular Intensive Care Units

  • Volunteer families mentor other families who are in similar or difficult situations (a rare diagnosis, difficult treatments, frequent admissions etc.)
  • Family rounders, patient family alumni host events
  • Family Voices of MN: partner with Family Voices to match similar diagnosis/treatments, matches can be made locally, state-wide, or nationally

“Caution, Look out ahead!”
Some of their biggest challenges in this area have been:

  • Spreading the philosophy that Patient and Family Centered Care is not to be confused with Service Excellence; they can have some overlap but in many ways they are distinctly different. Children’s Minnesota emphasizes their partnership with families is about “doing with” rather than “doing for.” If decisions are being that impact patient families, then patient families need to be at the table.
  • The Family Advisory Council is about true engagement of families, it does not exist solely for endorsing organizational ideas. Members must be partners in upstream design conversations; the goal is that the Family Advisory Council is not used to “rubber stamp” anything. Updates to the council may be made, but are limited compared to discussions where members have opportunity to provide feedback and help make the decisions. A guiding principle might be summarized by saying “Families should be involved from idea conception to ribbon cutting.”