Background: Coproduction of care is vital. It has been reported that “chronic care relies on informed, activated patients, as well as prepared, proactive healthcare professionals working together.” [1] In addition, incorporating patients and families provides “insight otherwise invisible to clinicians.” [2] The Children’s Health Dallas CF Center recognized the value of coproduction and supported creating a Parent Advisory Council (PAC) in 2014.PAC membership has shifted from a maximum of 12 members to 6 members over the past several years. The PAC members were struggling to fill leadership roles or be fully representative of a large CF center’s patient and family voice. Prior attempts to recruit new members at holiday parties, education days and through the PAC email newsletter had not been successful. Relying on clinic staff to generate interest was also not impactful. The need was clear to increase PAC members with a new approach. The SMART Aim was identified to “increase the number of engaged PAC members from 6 to 8 by June 26, 2021.”
Methods: Two PAC members, who are also Patient Family Partners (PFPs) in the CFLN, worked with a CFLN coach to develop this project. The “CFLN PFP Recruitment Change Package” was utilized as a guide and adapted to the PAC. A process map was created, and a Simplified Failure Mode Effects Analysis (sFMEA) was utilized, highlighting barriers (Figure 1). Supported by the clinic’s QI team, institutional Family Advisory Network (FAN) & Marketing, a larger CF clinic group was reached. Two emails were sent, the first on 5/26/2021 to the CF clinic newsletter list and a follow up on 6/2/2021 to a CF patient list (approximately 215 people). This email provided information about the PAC and requested anyone interested to complete a brief questionnaire indicating their availability and gauge interest. An additional process map was utilized to ensure timely goals were met.
Results: The SMART aim timing was adjusted to allow for background checks and other institutional requirements, but by November 2021, two new members joined the PAC. Three other candidates were identified during the project, and one was interviewed. Another did not return correspondence after completing a survey, and the third was declined as the patient was seeing a specialist at Children’s Health but the primary CF center was another location. Ultimately the one interviewed was unable to join due to a job change.
Conclusions: Although the SMART aim was met, as 2 new members joined for November 2021 meeting, these two members joined because of our former process (caught in one of the “failures” of our sFMEA) and our larger institution FAN. We plan to implement this QI project again as it did generate interest among the CF clinic families, improve relationships between the PAC and the larger institutional FAN, and increase visibility of the PAC among the clinic staff.
Acknowledgements: The authors would like to thank Breck Gamel (CFLN coach) and the Dallas CF Center for their support.
References: < ![1] Sabadosa KA, Batalden PB. The interdependent roles of patients, families and professionals in cystic fibrosis: a system for the coproduction of healthcare and its improvement. BMJ Qual Saf. 2014 Apr;23 Suppl 1:i90-4. doi: 10.1136/bmjqs-2013-002782. PMID: 24608555.
< ![2] Hempstead SE, Fredkin K, Hovater C, Naureckas ET. Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience. J Particip Med. 2020 Jul 13;12(3):e17875. doi: 10.2196/17875. PMID: 33064090; PMCID: PMC7434055.
