Courageous Parents Network

2023 accompishments: launching journeymap 1)presentation of the journey map at aahpm march 2023 and nhpco's virtual educational conference. 2)beta-testing of the journey map with a collection of exemplary end-users recruitment of 38 testers (12 clinicians, 7 patient disease groups; 19 Parents - april-may 2023) design of the beta-test tool - survey distributed via surveymonkey (may 2023) distribution of the survey to 38 testers - (may 2023) collection and distillation of feedback from survey (may-june 2023) 3)pre-launch activities -integration of survey feedback, which consisted primarily of editing content and republishing in the content management system -recording of audio files to accompany all text fields to support caregivers less proficient in reading or those who prefer to listen -production of intro video, including animation -creation of messaging and positioning materials -including of audio/listen feature and recording of audio files in english for every information page 4)launch of neurojourney.org - november 1, 2023 5)outreach and communications - ongoing -inclusion of links to neurojourney.org in each semi-monthly email communication to clinician and caregiver members (approximately 7000 individuals total) -drumbeat about neurojourney on cpn's social media platforms, including linkedin, instagram and facebook and twitter -openpediatrics complex care podcast featuring dr. julie hauer and cpn's jennifer siedman -2 demo presentations on zoom by cpn staff to a total of 38 Parents and clinicians -direct presentations - via zoom - to hospital-based clinician groups. As of 2/14/24, cpn has presented directly to 260 pediatric clinicians, including nurse case managers, complex care clinicians, palliative care clinicians, neurologists and two groups of pediatric residents: diversifying cpn's demographic, cultural, and geographical reach. -diversifying the voices on the cpn platform (videos, blog authors) and in live presentations that we give. Diversity across race (1) and geographical reach (2.) This is directed at belonging -assessing relevance of current cpn materials to a wider range of families - race; and what needs and experiences, rooted in systemic racism, exist that cpn 'could' do something to address (being true to our model). We are working with health resources in action to interview Parents of color about this. -assessing accessibility of cpn's content and what can we do to make it more accessible -- language, information graphics, subtitles on videos etc. -ultimately, we will likely hire an experienced person from the bipoc community (parent or clinician) to lead this part of the programming. -adding a clinician of color who is prioritizing health equity in their work, to the board. Scaling by developing a broader and larger number of caregivers able to (re)present cpn. Launched the parent champion program/blogger in residence -october training of 6 champions plus 2 former bloggers in residence included formal advocacy storytelling and presentation at mgh. -parent champions have already participated in 2 presentations; 1 podcast -parent champion program will be the focus of giving tuesday campaign presentations 12/10/23 mott children's peds residents 25 12/1/23 pedipals 11 11/17/23 ct pediatric palliative care coalition (builiding) at hole in the wall 25 11/16/23 hebrew college: spiritual counseling seminar 10 11/7/23 st. louis pfac 15 10/31/23 phoenix children's 119 10/26/23 uw pediatric grand rounds 95 10/25/23 nyc palliative care coalition 10 10/6/23 leukemia & lymphoma society - information resource center staff 24 10/4/23 rwj barnabas primary pediatric pall care education training, cohort 326 9/21/23cleveland clinic complex care 14