The path to ComeBackStrong after a stroke is not easy and the tools and support seem to be getting more difficult to access for survivors. With all the great advances and potential for technology to innovate and spark stroke recovery, those tools are still not getting in the hands of those that need it. I’m disappointed to hear that another tool that I had been following closely and which I believe had great promise is no longer available for stroke survivors.
The ComeBackStrong App was launched in 2015 with support from a pilot project of the Patient Centered Outcomes Research Institute (PCORI). This customizable mobile app had been developed for stroke survivors and caregivers specifically based on their feedback and needs. I took part in this early research and was interviewed as a stroke survivor for my impressions on what would I look for in a recovery app. I was optimistic the app would grow to help stroke survivors worldwide.
Unfortunately I’ve learned the ComeBackStrong App has been removed from the app store both in iTunes and Google Play.David Dansereau, Know-Stroke.org
I posted a video review in a previous post on the app’s promise, and have also followed with phone calls and emails to PCORI who funded the pilot interviews and app development for more than $618,738, but now as far as I can tell it is gathering app dust.
If anyone from PCORI, the former National Stroke Association (folding into the American Heart/Stroke Association), The State University of New York (SUNY) Downstate Medical Center, City University of New York (CUNY), or The Arthur Ashe Institute for Urban Health have any information to share on the apps demise please comment here. The app was developed through a collaboration with all these organizations and it has been a dead end to find information why it failed. I have my theories, and would be more than happy lend my support to help this app ComeBackStrong !
One theory- it was tested on only 7 users!
Help! Why not more??David Dansereau, Know-stroke.org
ps-I’m also a PCORI Ambassador but have not had any success getting a stroke patient’s voice heard on this subject.
Direct link to my ComeBackStrong app review