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More from the Patient- and Family-Centered Care Conference

More from the Patient- and Family-Centered Care Conference

November 7, 2014

Patient and Family-Centered Care Conference

The last two days of the Institute for Patient- and Family-Centered Care’s (IPFCC) seminar were chock full of opportunities to learn, share and network.

I attended a workshop called “Beyond the Startup of a Patient and Family Advisory Council” at which many PFAC liaisons, staff, and patient and family members shared some of their challenges and ideas. Some of the items that stood out included:

  • how to work to ensure PFAC members value their position and role and feel that their input matters and makes a difference,
  • measuring PFAC member involvement and effort, examples of thorough orientations,
  • having advisors who are not on the PFAC but are on hospital committees/projects, and
  • using the CEO and other top-level staff for assistance with recruiting.

A session focusing on collaborating with patients and families for quality improvement pointed out that it saves time (and often money) to get patients/families involved early on in a project rather than finding out later on that something you have implemented does not work. The session discussed how to prepare patients/family members to be effective participants in a quality improvement project and also how to prepare the other staff involved in the project for working with and including patients/families.  Attendees were strongly encouraged to have more than one patient/family member on any given project/committee.

A lunchtime session on the IPFCC’s Better Together campaign brought together some Massachusetts-based conference attendees and others to learn more about the campaign and discuss how it may be implemented in their institutions. The Better Together campaign aims to have 1,000 hospitals change their visiting policies by 2017 from restricted visiting hours to acknowledging families (however the patient defines his/her family) as partners in care rather than “visitors”. Hospitals can pledge on the website to work toward this goal and then they will be part of a learning community with other hospitals also involved in this effort.

The week started with a panel of moving and insightful patient stories and ended with a talk given by Juliette Schlucter, the Director of the Center for Child and Family Experience at NYU Langone Medical Center.  She spoke of caring for her two children with cystic fibrosis and the experiences they had that were not patient- and family-centered, and then the work she did with the hospital they used in Philadelphia to listen to the patients and families and value their input into the care of their children. Bookending the week with all of these amazing stories really brought home why leaders of every health care institution in all care settings should strive to put patients and families at the center of care and prioritize their needs above all else and also bring patients and families into the decision-making process through PFACs and in other ways. These stories and many others exemplify how patients and families can make a huge positive difference in the way care is provided.

   -Deborah Wachenheim