Sleep MD reaching out - help and collaboration welcome

[aviB]

Hi Apnea Board,
I am a board certified physician and all too often come across patients who do not get the help they need when starting/adjusting to CPAP. Between DMEs and Sleep Docs (me included) just do not have the incentive or time to work on issues that matter to the patient. I have been blown away by this forum and other Sleep Apnea/CPAP threads on Reddit. 

My thoughts: When it comes to interpreting data, each patients clinical situation and comprehension on making adjustments is different. I would like to work with anyone who can help combine my clinical knowledge with their understanding of the SleepyHead software or other CPAP download software to make automated suggestions to users of CPAP, based on their download data and clinical background.

Thoughts and feedback welcome.

Sleep well.

[Walla Walla]

Good luck with the project.

[Sleeprider]

This is a wonderful request to hear. Sleepyhead brings all of the recorded machine data to a visual context that can facilitate fast, easy interpretation. Your request is refreshing in that you are open to the input of lay people, familiar with the data, and it's clear you are open to the input of your patients. The Sleepyhead software reveals not only what events are occurring, but also their relationship to respiratory flow, including flow limitation; reveals patterns that can suggest the presence of positional apnea that is not responsive to pressure; and important respiratory information like tidal volume, minute vent, respiratory rate, and timing of inspiration and expiration.

I would be glad to help in anyway possible, but I think you should clear this proposal with the forum owner and administrator, SuperSleeper, before I would recommend anyone contacts you privately, to authenticate your credentials and interest here.

[SuperSleeper]

I would like to work with anyone who can help combine my clinical knowledge with their understanding of the SleepyHead software or other CPAP download software to make automated suggestions to users of CPAP, based on their download data and clinical background.

Hello aviB - I would encourage you to reply publicly in this thread rather than using the forum private message system (PMs) unless it's absolutely necessary for the sake of retaining privacy for our forum members.

Since we're not quite sure what the project entails, we'd like to have as many eyes on the discussion as possible and make this discussion open and public.

Thanks.

[Sleeprider]

Re-reading your post, it appears I misunderstood your proposal.

"I would like to work with anyone who can help combine my clinical knowledge with their understanding of the SleepyHead software or other CPAP download software to make automated suggestions to users of CPAP, based on their download data and clinical background."

Sleepyhead is a collaborative effort and is mostly the work of Mark Watkins. A number of volunteers are on the development team, and help to decode machine data, write help files and translations, etc. Sleepyhead does not diagnose or recommend anything; its purpose is to present the data recorded on the machines kt supports, in a useful and understandable graphic and tabular format. The development of a logic code to interpret the events and graphics seems well beyond the scope and capability of the project team; however, Your knowledge would be very welcome in developing help for the program. If you are interested in working as part of the development team to provide insights on the help and support potion of the program, I can easily get you involved. Be aware that the program development has been mostly inactive for the past five months, but help file development can be ongoing; I just don't expect this aspect to be automated in response to events.

[Gideon]

The closest we have to an automated analysis is our WIKI. There we have interpretive and how to articles. We want the articles to be factual and accurate. We also want it to be as complete as possible. As one of the wiki editors here I would appreciate any guidance.

I believe that we here at the Apnea Forum do a very good job of helping users optimize their therapy. What can we do to get Doctors to be more accepting of what we do?

Another thing is that on our forum we do refer users to doctors if we feel the case is above us or if it involves situations beyond apnea and not already in a doctor's care for it.

Fred

[aviB]

Yes, thanks for the feedback. Have run this by admin. Not looking for anything behind the scenes. This forum has been eye opening and would like to have this as an open endeavor.
My frustration (if you would allow me to indulge), is that as 'providers' we are taught certain things but do not have the ability or openness to incorporate the patient experience. We brush things off when we do not understand the poor experience a patient goes through. 

My goal (with the help of this community) is not to make treatment recommendations via software, instead to provide some automated suggestions (translations of what the data 'could' mean), which the patient can take back to their MD or equipment provider. This allows for greater patient empowerment and more fruitful conversation with their provider instead of just being told what to do.

[aviB]

The closest we have to an automated analysis is our WIKI.  There we have interpretive and how to articles.  We want the articles to be factual and accurate.  We also want it to be as complete as possible. As one of the wiki editors here I would appreciate any guidance.

I believe that we here at the Apnea Forum do a very good job of helping users optimize their therapy.  What can we do to get Doctors to be more accepting of what we do?

Another thing is that on our forum we do refer users to doctors if we feel the case is above us or if it involves situations beyond apnea and not already in a doctor's care for it.

Fred

Technology and medical knowledge is moving faster than most doctors can keep up with. Many doctors do not know what to do with most of the data you can download thru SleepyHead, as training for sleep physicians focuses on a broad spectrum of sleep issues. How do we make the software more user friendly and mainstream?


As a sleep doc, I would love to have a tool that can help my patients acclimatize or adapting better to CPAP - reducing unhappy phone calls or just not using CPAP (which is such a waste). 
If making treatment suggestions, this tool needs to be validated using inter-observer reliability (expert consensus).


I do hope I am making sense. I'm open to anyone educating me, if I have this wrong