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Firefly Chat: The Challenges of Organizing Medical Data - Shared screen with speaker view
Elizabeth West
31:45
Good Morning from California!
Akilah Gilbert
35:59
Confusing
Elizabeth West
36:01
Overwhelming
Dana Dombrowski
38:28
Thank you everyone for sharing and welcome!!
Pat Fox
41:08
I made a book to keep all the information in. We are talking 20 years ago. ER loved it!
Dana Dombrowski
43:49
what are tools that have worked for your family/patients and families to organize medical data
Pat Fox
44:39
Neve use, except if I need to find information
Pat Fox
45:56
As for the model of a Medical Home. I always ask for a copy of the notes be mailed to me.
Melissa Hunt
46:15
All medications is very helpful! You need that information when evaluating what to try next.
Pat Fox
47:07
Also try to get all doctors to share their notes with other doctors that follow my son
Pat Fox
50:42
Care Notebook goes everywhere my child goes. Includes Emergency contacts, baselines for my child, settings for any medical equipment, etc.
Pat Fox
54:04
Also in the St. Louis area we have a program called STARS in which a special needs child is "registered" with their local FD. So in case of an emergency anywhere 911 can be told they have a stars patient # xxx and get connected with the patients local FD in order to know how to take care of the patient and their medical needs. This includes training EMTS on changing a trac ect. as that is not something they are normally trained.
Pat Fox
54:28
The STARS program is hoping to go nationally some day'
Pat Fox
55:44
Medical providers also need to know that parents can be on different paths as for as medical care, and when to say when.
Betsy Hawley/PPCC
58:01
And charts are HUGE! So hard to go through
Ivy Goldstein
58:53
Such an important topic - thank you all. At one time, there was an app that organized health records and allowed me to create documents (e.g. seizure history, list of illnesses, surgeries/procedures, etc...) It included an option for $30/month for them to collect health records from my daughter's providers (past and current). It was amazing and easy to use. Unfortunately, the developer folded which left me leery about health organization apps. Now, I keep everything in Microsoft OneDrive in files/documents I've created. Recently I looked at ones developed by Apple and Microsoft - even these ginormous companies are not supporting their health apps as they did originally. Looking forward to hearing more about Lightning Bug (though I may still be leery).
Patricia Scott
01:00:35
In our state, you can call the FD and register your child and your address then provide important info about your child's needs.
Shannon Woodman
01:01:12
I wish medic alert would allow us to add extra notes on the child
Pat Fox
01:01:38
My local department knew my son. They "adopted" him as one of theirs. Some would provide respite for us. When he came home from his last hospital stay to pass at home. The local FD brought him home. They also were his pallbearer and wore their dress uniform.
Shannon Woodman
01:05:24
Can the app be synced with google calendar?
Betsy Hawley/PPCC
01:08:18
Currently, it does not sync to Google calendar. It would be great if it could!
Betsy Hawley/PPCC
01:09:03
We will share the chat with everyone so that links will be available to all
Pat Fox
01:11:39
Does the app allow for up load/down load of documents
Betsy Hawley/PPCC
01:12:37
Currently, it does not allow for up load.
Betsy Hawley/PPCC
01:13:02
You can download all the information to a pdf and email or print
Pat Fox
01:13:23
Also is there a place for IEP/IHP
Betsy Hawley/PPCC
01:13:42
If anyone is interested in working with PPCC on future iterations of the app, but contact me: betsy@ppcc-pa.org
Ivy Goldstein
01:13:43
I agree it will be a plus to be able to upload docs, including ones the parent creates.
Betsy Hawley/PPCC
01:14:07
We need user feedback!!
Pat Fox
01:14:16
Betsy, please include me. Pat.fox@health.mo.gov
Pat Fox
01:14:41
What about IHP
Pat Fox
01:15:12
Feeding Instructions etc. would be under IHP
Pat Fox
01:15:19
IHP is Individual Health Plan
Pat Fox
01:16:06
Schools are now required to include in with an iep or just an IHP if there are no cognitive delay.
Betsy Hawley/PPCC
01:16:23
You can access the app from the ppcc website: ppcc-pa.org under the App/Resources tabl
Betsy Hawley/PPCC
01:16:46
It can be downloaded from the App Store. Both Apple and Android
Samantha Hines
01:17:40
I am a social work student in the Craniofacial Center at UNC Chapel Hill and just want to thank you all for this information and sharing your personal experiences, I think it will be really helpful for our families.
Ivy Goldstein
01:19:11
What is the organizational commitment to ensure sustainability of the app? It's very exciting work you are doing and a critical need for families. Thanks.
Pat Fox
01:19:44
One thing that is hard to talk about is end of life. 5 Wishes is a great resource for knowing what a child wants or doesn't want
Pat Fox
01:20:29
Where do we find your care notebook
Pat Fox
01:21:05
They actually have one for under 18
Betsy Hawley/PPCC
01:21:18
https://www.ppcc-pa.org/toolkits-2/caring-conversations
Pat Fox
01:21:19
That's it.
Dana Dombrowski
01:21:43
www.agingwithdignity.org
Andrea Radulovic
01:21:52
At Brenner Children's Hospital at Atrium Health Wake Forest Baptist, our team has created a Clinical Summary that includes all diagnoses, medications, a synopsis for each sub-specialty involved in the child's care that includes: the provider contact information, most recent visit information, important imaging or lab results, surgeries, medical technology with orders. We also include all community providers/agencies contact information. The document can take several hours to prepare, but is easily updated once completed. We put it in the EMR and update whenever there is a hospitalization or change in care. We love it when we see other providers cut & paste from it. The children's pediatrician really appreciate these synopses.
Pat Fox
01:22:30
All about me should be included in a care plan
Betsy Hawley/PPCC
01:22:50
I would love to see that tab on the Lightning Bug app!
Betsy Hawley/PPCC
01:24:04
The page on the website will take you to a web browser to do that initial uptake
Pat Fox
01:24:12
How does a child communicate. My son used a communication device. He started with a red button which only allows 1 word or sentence. When in the hospital he always wanted "Go away" so when a doctor walked in he could tell them "Go away" he got laughs from them every tiem
Pat Fox
01:24:17
time
Betsy Hawley/PPCC
01:24:29
We do not have access to any data inside each individual record
Becky Oakley
01:28:50
It's wonderful to meet you all and to hear of your comments and ideas! Thank you to your PPC coalition for a great chat about a really great resource!
Ivy Goldstein
01:29:17
Thank you, Cassie. Being that you aren't a private developer and are family-driven gives may actually be the key. I'm hopeful, too, and will share this with many - including possible parents who want to be part of the iterative process. Family need a tool for organization - TYSM?
Ivy Goldstein
01:29:23
TYSM!!
Akilah Gilbert
01:29:23
Thank you for this! I learned a lot!
Elizabeth West
01:29:39
thank you very much
Dana Dombrowski
01:29:47
Thank you so much everyone!@