The keynote speakers at three CFFC Education Day events talked about the importance of the involvement of people living with CF (and their families) in the management of their care.
- 2014: Dr. John Marks discussed how a multidisciplinary team can work with patients and families to improve adherence and possibly outcomes
- 2015: Lynn Feenan’s program dealt with the benefits of patient engagement in their health care and strategies for patient advocacy
- 2016: Tiffany Christensen led a program entitled “Patients as Partners: Creating Authentic Healthcare Teams through Shared Language”
It is rewarding to see that the CF Foundation is promoting similar concepts in its care model. The Spring 2018 Community Voice Newsletter included the following observation:
Several Community Voice members participated in interviews to gather feedback on how the Foundation describes CF care – specifically how people with CF and their family members are supported by the Foundation in managing their CF. The feedback from these interviews showed:
The Foundation’s approach to describing CF care is compelling, but aspirational. It is important to acknowledge that the ideal model of care might not be experienced by all people.
The Foundation should continue to support the partnership between the clinical care team and people with CF and their families as a critical component of producing and maintaining desired health.
People with CF and their families want to hear more about how care teams, the Foundation, and the larger community can work towards making this approach to CF care a reality.
In addition, this graphic [CFF_CareModel] was also created to complement these key points.