In 2012, I had
the honor of being asked to sit as a patient representative on Patient Family
Centered Care Committee at the University of Colorado. The university hospital
took care of cystic fibrosis patients for in-patient care at that time, and
they really wanted to improve the care that they delivered. It was a
collaboration with care
team members that included respiratory therapists, nurses and doctors, and
I brought the patient perspective. I felt that I was making positive changes
to our health care by advocating for the CF community. The
committee's work eventually ended, but I found that I valued working alongside
the health care team.
When I went back to school in 2013, I knew that
I wanted to make a difference in the lives of other adults with CF by
becoming a patient advocate. I wanted to continue working with care teams to
improve health care delivery for patients. I felt that this was my calling.
About one year later, I realized that I wanted to help patients now instead
of waiting until graduation.
I reached out to my local adult CF center to see if it might
be possible to start a patient advisory council. Patient advisory councils
work with health care organizations to improve the patient and family
experience of care in a number of ways. For example, patients and family
members can serve on committees with clinic staff to ensure that the
patient's perspective is part of quality improvement initiatives. I thought
it would be great to get patients and the health care team to work together
to improve care. Unfortunately, the response to my proposal was not quite
the one I wanted to hear.
I was told it wasn't the right time
because clinic staff was working on many internal changes that required
their attention first. I felt a bit deflated. However, I continued to check
in periodically to see if now was the right time. Although clinic
staff supported the idea, the answer was always the same: not yet. About one
year later, I had just about lost hope that the right time would ever
arrive. However, I tried once more and one of the nurse coordinators was
willing to begin.
Elated, I jumped right into it. We created a closed Facebook
group for clinic patients who wanted to join the council, which enabled us to
safely discuss our health care without infection or privacy concerns. I now
relay the Facebook conversations to the nurse coordinator and the social
workers at the clinic about once a month, and we discuss the best ways to
address the issues and concerns.
This endeavor has been going on since
June 2015, and even as new as the group may be, the collaborative work
between the patients and the health care team have yielded some great ideas
for change. For example, to make it easier for patients to contact the right
member of the care team, we suggested creating magnets with important care
center phone numbers. These magnets have been handed out to patients and
their families since December. The Facebook group also discussed the best
ways to introduce patients who are transitioning from pediatric care to the
adult clinic. The end product, which came out of the communication between
the Facebook group and the health care team, was a bag with materials that
help new patients and families learn what to expect at the clinic. The bags
include the magnets mentioned above and other important materials for new
patients.
These improvements happened because patients and
the staff worked together.
I want to encourage anyone hoping
to start their own patient advisory council to pursue it -- with patient
persistence, if need be. It took me about a year of bugging my health care
team to finally turn it from an idea into a reality. Did I mention that I
began to lose hope? That's normal, but even when feelings of hopelessness set
in, continue pursuing it. Keep talking to people about the idea: health care
staff, other patients, friends and family. Eventually, someone will help
launch the group.
It's worth it. Especially because if patients and
family members want to make a change, the best way to ensure that change can
happen is by speaking up and working in harmony with their CF care team.
That's the starting place.
Patient advisory councils offer a positive
way to advocate for change, and, as a result, improve the health of those of
us with CF. Change can take time, but the wait is worth it. That's when
patient persistence becomes a great ally.