Adult CF Health Care Initiative

6

65roses

New member
Hi everyone:

I am doing some research for a company to possibly initiate a nation-wide Adult CF Health Care Management Initiative. If you could give input as to what you would want for one-stop Adult shopping for CF -- what would it be? A listing of your current meds; a listing of your current stats (PFTS, sputum cultures, etc.)...etc., what would make your life easier if you could pick up the phone and ask? Would you call and ask and would you like someone to help you "manage" your CF....I know I get bogged down with the paperwork and other things, keeping track of my doctor visits, meds, stats, etc., gets so involved, I know I could use a personal "case manager" so to say to help. Is this something you'd be interested in if it could be covered by your insurance?
 
6

65roses

New member
Hi everyone:

I am doing some research for a company to possibly initiate a nation-wide Adult CF Health Care Management Initiative. If you could give input as to what you would want for one-stop Adult shopping for CF -- what would it be? A listing of your current meds; a listing of your current stats (PFTS, sputum cultures, etc.)...etc., what would make your life easier if you could pick up the phone and ask? Would you call and ask and would you like someone to help you "manage" your CF....I know I get bogged down with the paperwork and other things, keeping track of my doctor visits, meds, stats, etc., gets so involved, I know I could use a personal "case manager" so to say to help. Is this something you'd be interested in if it could be covered by your insurance?
 
6

65roses

New member
Hi everyone:

I am doing some research for a company to possibly initiate a nation-wide Adult CF Health Care Management Initiative. If you could give input as to what you would want for one-stop Adult shopping for CF -- what would it be? A listing of your current meds; a listing of your current stats (PFTS, sputum cultures, etc.)...etc., what would make your life easier if you could pick up the phone and ask? Would you call and ask and would you like someone to help you "manage" your CF....I know I get bogged down with the paperwork and other things, keeping track of my doctor visits, meds, stats, etc., gets so involved, I know I could use a personal "case manager" so to say to help. Is this something you'd be interested in if it could be covered by your insurance?
 
6

65roses

New member
Hi everyone:

I am doing some research for a company to possibly initiate a nation-wide Adult CF Health Care Management Initiative. If you could give input as to what you would want for one-stop Adult shopping for CF -- what would it be? A listing of your current meds; a listing of your current stats (PFTS, sputum cultures, etc.)...etc., what would make your life easier if you could pick up the phone and ask? Would you call and ask and would you like someone to help you "manage" your CF....I know I get bogged down with the paperwork and other things, keeping track of my doctor visits, meds, stats, etc., gets so involved, I know I could use a personal "case manager" so to say to help. Is this something you'd be interested in if it could be covered by your insurance?
 
6

65roses

New member
Hi everyone:
<br />
<br />I am doing some research for a company to possibly initiate a nation-wide Adult CF Health Care Management Initiative. If you could give input as to what you would want for one-stop Adult shopping for CF -- what would it be? A listing of your current meds; a listing of your current stats (PFTS, sputum cultures, etc.)...etc., what would make your life easier if you could pick up the phone and ask? Would you call and ask and would you like someone to help you "manage" your CF....I know I get bogged down with the paperwork and other things, keeping track of my doctor visits, meds, stats, etc., gets so involved, I know I could use a personal "case manager" so to say to help. Is this something you'd be interested in if it could be covered by your insurance?
 
S

Skye

New member
this sounds awesome....i am not sure i quite understand what the resource would be though. I am currently looking for a better way to manage medical information and have it readily available for me at all times. If that is what you are proposing, I think that would be great. I have done some checking into online services; however, I think there are a lot of concerns about security. Things I need access to and carry in hard-copy are...cultures, PFT's, labs. Those are the biggies.
 
S

Skye

New member
this sounds awesome....i am not sure i quite understand what the resource would be though. I am currently looking for a better way to manage medical information and have it readily available for me at all times. If that is what you are proposing, I think that would be great. I have done some checking into online services; however, I think there are a lot of concerns about security. Things I need access to and carry in hard-copy are...cultures, PFT's, labs. Those are the biggies.
 
S

Skye

New member
this sounds awesome....i am not sure i quite understand what the resource would be though. I am currently looking for a better way to manage medical information and have it readily available for me at all times. If that is what you are proposing, I think that would be great. I have done some checking into online services; however, I think there are a lot of concerns about security. Things I need access to and carry in hard-copy are...cultures, PFT's, labs. Those are the biggies.
 
S

Skye

New member
this sounds awesome....i am not sure i quite understand what the resource would be though. I am currently looking for a better way to manage medical information and have it readily available for me at all times. If that is what you are proposing, I think that would be great. I have done some checking into online services; however, I think there are a lot of concerns about security. Things I need access to and carry in hard-copy are...cultures, PFT's, labs. Those are the biggies.
 
S

Skye

New member
this sounds awesome....i am not sure i quite understand what the resource would be though. I am currently looking for a better way to manage medical information and have it readily available for me at all times. If that is what you are proposing, I think that would be great. I have done some checking into online services; however, I think there are a lot of concerns about security. Things I need access to and carry in hard-copy are...cultures, PFT's, labs. Those are the biggies.
 
6

65roses

New member
Hey Skye....nice to hear from you. I think it sounds great too, but I too, have some concerns as far as security issues. I hoping that it will be brought on by one of the pharmeceutical companies and that will take care of the HIPAA issues.....I'm not quite sure how it's going to work either....I just hope we can get it TO work! I thought about the hard copy issue too - -I guess these are things I better start taking notes on.

I am so glad to have your response. How have you been???? Hope all is well. I'll keep you POSTED on how and if this thing goes......keep your fingers crossed -- it could just be the thing we all need!
 
6

65roses

New member
Hey Skye....nice to hear from you. I think it sounds great too, but I too, have some concerns as far as security issues. I hoping that it will be brought on by one of the pharmeceutical companies and that will take care of the HIPAA issues.....I'm not quite sure how it's going to work either....I just hope we can get it TO work! I thought about the hard copy issue too - -I guess these are things I better start taking notes on.

I am so glad to have your response. How have you been???? Hope all is well. I'll keep you POSTED on how and if this thing goes......keep your fingers crossed -- it could just be the thing we all need!
 
6

65roses

New member
Hey Skye....nice to hear from you. I think it sounds great too, but I too, have some concerns as far as security issues. I hoping that it will be brought on by one of the pharmeceutical companies and that will take care of the HIPAA issues.....I'm not quite sure how it's going to work either....I just hope we can get it TO work! I thought about the hard copy issue too - -I guess these are things I better start taking notes on.

I am so glad to have your response. How have you been???? Hope all is well. I'll keep you POSTED on how and if this thing goes......keep your fingers crossed -- it could just be the thing we all need!
 
6

65roses

New member
Hey Skye....nice to hear from you. I think it sounds great too, but I too, have some concerns as far as security issues. I hoping that it will be brought on by one of the pharmeceutical companies and that will take care of the HIPAA issues.....I'm not quite sure how it's going to work either....I just hope we can get it TO work! I thought about the hard copy issue too - -I guess these are things I better start taking notes on.

I am so glad to have your response. How have you been???? Hope all is well. I'll keep you POSTED on how and if this thing goes......keep your fingers crossed -- it could just be the thing we all need!
 
6

65roses

New member
Hey Skye....nice to hear from you. I think it sounds great too, but I too, have some concerns as far as security issues. I hoping that it will be brought on by one of the pharmeceutical companies and that will take care of the HIPAA issues.....I'm not quite sure how it's going to work either....I just hope we can get it TO work! I thought about the hard copy issue too - -I guess these are things I better start taking notes on.
<br />
<br />I am so glad to have your response. How have you been???? Hope all is well. I'll keep you POSTED on how and if this thing goes......keep your fingers crossed -- it could just be the thing we all need!
 
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