CF Matters Podcast

In this episode of CF Matters, Breck and Erin chat about the challenges of parenting a child with Cystic Fibrosis.   Breck and Erin specifically discuss their feelings of comparing themselves to parents of non-sick children.  They discuss their disappointment that children with cystic fibrosis are limited by infection control issues.  And they share how they personally work through parenting their children with CF despite frequent hospitalizations and invasive procedures.

On this episode of CF Matters, we continue our interview Michael Seid, a behavioral psychologist who studies collaboration within the healthcare system, on ways we can improve Cystic Fibrosis care. See more of Michael's Work: http://c3nproject.org Tell us what you think!  Tweet us at @cf_matters or use the hashtag #cfmatters!  

On this episode of CF Matters, we interview Michael Seid, a behavioral psychologist who studies collaboration within the healthcare system, on ways we can improve Cystic Fibrosis care. See more of Michael's Work: http://c3nproject.org Tell us what you think!  Tweet us at @cf_matters or use the hashtag #cfmatters!

On this episode of CF Matters, we talk about the Cystic Fibrosis Care Model of the Future and the design meeting that recently took place.  We discuss what is wrong (and right) with the current CF Care Model and why we need a new system to care for those with CF.  In this episode, we discuss specific ideas being evaluated such as a CF Exchange of information, Empathy Cards, a national network of CF Patient and Family Councils, all for the goal of patient-clinician-researcher collaboration in CF Care and so much more. Tweet us your thoughts at #CFmatters.  Give our podcast a review on iTunes! Other resources to consider on this topic: C3NProject (http://c3nproject.org/) A blogpost about the 2nd CF Care Model of the Future Design Meeting  

On this episode of CF Matters, we talk about Patient & Family Advisory Councils (PFACs) and how they fit into the Cystic Fibrosis Care Model. We discuss how PFACs are or could be organized and governed for optimal benefit of patients, families and care centers to collaborate for improvement.   Other resources to consider on this topic:   Facebook CF Family Advisory Board Collaboration Group:  https://www.facebook.com/groups/619826451452613/   The Institute for Patient and Family Centered Care:   ipfcc.orgTalk by CF Patient Tiffany Christensen about her patient experience:http://cchmcstream.cchmc.org/MediasiteEX/Play/424e67c03f79433a9937a5a7f96df1781d

On this episode, we talk about Medical Records.  We discuss the limitations and possibilities of Medical Records and personal health records when dealing with chronic disease care. Two resources discussed on this podcast are PicnicHealth: https://picnichealth.com/ Orchestra: http://c3nproject.org/innovations/patient-self-tracking-continuous-care/orchestra What other Medical Record resources do you know about?  Tell us!  Tweet us at @cfmatters using the hashtag #cfmatters or email us at cfmatters@gmail.com!

Two mothers of children with the life-shortening disease, cystic fibrosis, share their experiences of living with a chronic condition. In this episode, Breck and Erin share about the cognitive burden of cystic fibrosis and ways they try to mitigate the impact it has on themselves and their families. Here are a few of the links from the podcast for those interested in learning more: Smart Patients Community: http://smartpatients.com BetterPHA, Better Personal Health Assistant: http://getbetter.com Pill Pack: http://pillpack.com