Patient and Family Advisory Council: Lessons Learned

I recently set up a patient and family advisory council to address safety and quality concerns from the patient/family perspective. Creating an organizational structure that would fit within the culture of the organization has certainly been the easy part. We started with a six-month pilot and then evolved based-upon what we learned as we progressed through the process.

I recently set up a patient and family advisory council to address safety and quality concerns from the patient/family perspective. Creating an organizational structure that would fit within the culture of the organization has certainly been the easy part. We started with a six-month pilot and then evolved based-upon what we learned as we progressed through the process. However, this blog post isn’t about that stuff.  It is about what it like to sit in a room with patients and family members who want to share their experience to make it better for those who follow.

The first lesson is to prepare yourself to listen that very first meeting.  Emotions that have been simmering under a lid will finally come out and there may be a bit of splattering all over the walls.  However, don’t get defensive, don’t try to explain why….. just listen.  Before any really work to improve processes and quality can begin patients and their family caregivers need to have an opportunity to share their frustrations and know that someone who cares is listening.  You may also see a little of this bleed into the second meeting, so don’t panic.  Gradually, the patients and family members will be ready to work toward shared goals.

The second lesson is to not be so surprised by the first lesson.  Prepare leaders for the fact that it isn’t  just a “bitch” session, nor an example of how an advisory council was a big mistake in the first place.  When there is no or ineffective communication with patients, the pressure will build and then it shoots out when there is finally an opportunity for release.  Think of it as a hose with its nozzle finally opened. 

The third lesson is to be prepared for some strong facilitation.  All of that emotion needs to be managed and directed in a productive manner.  It needs to be controlled so that everyone has a chance to be heard and weaknesses or gaps in processes identified.  Re-direction and probing questions are two very important tools for gathering usable information.

The fourth lesson is to ensure there is follow-up and communication back to the advisors.  Actually looking into making changes and implementing their suggestions will build trust and help keep the advisors engaged.  Even if something can’t be changed, because it violates a law, regulation or corporate policy, the fact that the idea was explored or the “reason why” explained will help keep advisors coming back.

The last lesson is to make sure you have real work for the advisors.  The sharing of stories and talking will get old after a few meetings for both the advisors and staff.  This is when the group is ready to transition to the real work of improving the quality, safety and experience of the healthcare.  This work will come from the key strategies that affect patients and from the stories the advisors share about their experiences.  By listening, you will soon identify the work to be done by your patient and family advisory council.

What are you waiting for? Start listening today!

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