All of Us Research Program Reviews

by Jakeindc

Unfortunately both AllofUsResearchProgram and the program have issues. AllofUsResearchProgram is still not completely syncing with HealthKit. The notifications I get in AllofUsResearchProgram are not all the same as I get by email. As others have said, why are there two apps? More information on DNA results would be good. It has been 6 months and only some results are there (others who sent I after me have gotten more data). Link from within AllofUsResearchProgram don’t always work. I signed up to link an external provider. Two weeks later I am still getting a still syncing message. And why is there such a limited number of providers you can link to? Why number major labs and drug stores? And the biggie that makes me question the program.

I got major web site issues (links not working, cryptic messages, etc) when attempting to sign up for local blood work. I have sent emails to help/support twice in the last three weeks and still waiting for a response. I tried online chat and it was obviously they knew nothing about the program.

I REALLY like the idea of the project. I have participated in several research programs that are very time consuming and feel we all owe to help out research when we can. But some of these issues make me question this program and their commitment to follow through on the project.

by Billybobbrash

When I joined AllofUs, I thought it would be a win-win…I would help the project with medical discoveries and I would learn information that may significantly improve my health. I have many medical diagnoses. The genetic data that they have provided back to me is lame trait information such as ancestry locations (entirely misses my arctic and native ancestry),bitter taste perception, ear wax type, cilantro taste preference, lactose intolerance (basically things that I already know from lived experience). All in all, this is trait information that cannot help me improve my wellness. While I have not removed myself from the project, I will no longer advocate participation until I see evidence that they have a commitment to meaningful sharing of medical genetic information.

by StephenAT

I’m glad to participate in the research program. It’s a great opportunity. AllofUsResearchProgram , though, is essentially worthless. Nine times out of ten, login fails. And on the rare occasions when I am able to login, all of the pages either show nothing but a progress spinner or, more frequently, a “something went wrong” error message. The web site seems to have similar problems, so I assume their servers are just not up to the job.

by Joerock97

AllofUsResearchProgram itself has yet to ever load after the first time I logged in. It doesn’t matter how many times I completely close out AllofUsResearchProgram and realize it, how many times I reboot my phone or what updates come out. I cannot open AllofUsResearchProgram and get anything to show up. I am always forced to go into a browser to check in and depending on what I do it will still try to kick back to AllofUsResearchProgram and repeat the same blank loading pages.

by GeoFla

I was clearly lied to in order to get me to participate. I was lied to by the recruiter and during my donation, I was lied to by the individual who took my samples. I was told I would receive my complete gene report within 6-9 months of donating. This is the reason why I chose to participate. I was also told upon arrival I would receive my complete report in approximately 6 months. Obviously your recruiters and staff are incentivized to lie and greatly exaggerate or the program manager may be lying to staff members. The program lacks integrity. How can anything else be trusted

by Doug On A Bicycle

I am an early adopter of the Precision Medicine Initiative, and have eagerly followed it, fulfilling all of my data requests. I am also an old white guy, not quite dead, and wonder if there are thumbs on the scales of equality of opportunity in the All of US app.

I downloaded it again, tried it again, and deleted it again.

by Trilobitegirl

As a scientist myself, I wanted to help out and contribute to this research. However, after trying to figure out where all of the space on my phone went, I discovered AllofUsResearchProgram was taking over 100GB! No, that is not a typo…100…GB. That is beyond insane and it was immediately deleted from my phone. I don’t know what could possibly be taking up that much room considering an entire iPhone update takes 5-10GB!

by Brad13212

AllofUsResearchProgram just has too many issues. First, the size of Documents & Data in AllofUsResearchProgram keeps ballooning and is over 10gb. By far the most space taken by any app on my phone. Sometimes AllofUsResearchProgram won’t open or just crashes. It is slow and laggy. Sometimes I’ll enter a form and then it pops up like I never did it at all. There isn’t much transparency on the status of anything or if you’ve done something wrong. I’d love to have confirmation that they will give me DNA results someday and that I won’t be ruled out just because AllofUsResearchProgram messed something up.

by Ihartmyiphone

AllofUsResearchProgram is slow in general, but especially while first loading. The most frustrating part is the surveys. When you spend 15 minutes completing a survey the last thing you want to see is an error message resulting in nothing being submitted. This has happened to me at least 5 times. I’m not doing any more surveys until AllofUsResearchProgram is running properly.

by Crazy137

I love the premise of the study and the experience of being a participant has been great but AllofUsResearchProgram hardly even works. When I open it, it often will never leave the login page, say “network error” when I have good internet connectivity, crash for no reason, and refuse to display my information. I usually have to use the web version of the participant portal to see anything

by Rks1268

I am a huge supporter of this program. However, I am not one to handle a task or survey on my phone when I can do the same on my iPad. Why should I have to turn my iPad to Portrait mode each time I open AllofUsResearchProgram. Let’s get it together and make it available across all platforms with the correct formatting for each.

by PO'd Scientist

I just tried loading the All of Us app. As others have noted, it is still slow to load and I too don’t see the need for it. Perhaps those that use it to link with their FitBit can make use of it better than I can. In the meantime I’ll delete it.

by Lapower8

Almost every time I try to open AllofUsResearchProgram to fill out more information, it won’t actually load and just stalls.

by Lior.bshalom

I have the other All of Us app, and I just tried logging in through the website and it didn’t recognize my info. Clicking to go into AllofUsResearchProgram , it opened an option to download this one, and it still didn’t know who I was. It’s been at least 8-9 months since I joined the research, and have been receiving emails on a regular basis whenever there’s news or a new questionnaire to answer. AllofUsResearchProgram has actually let me sign up as a new participant. What on earth?!?
Not filling in anything in AllofUsResearchProgram until this is figured out, and I really hope that the DNA sample is truly with All of Us and nowhere else. I’ve been told that I should be receiving the results sometime soon, and was wondering how do they come in, hence going online in attempt to figure it out.

by Mssss Noem

After an update AllofUsResearchProgram won’t even open on my iPhone. iPhone is fully updated and is is software version. Most of the time it doesn’t make it past the apps first screen. Sometimes I am lucky and it goes to a blank white screen next. Tried to use app from web, and it keeps rerouting to app to finish doing things (like trying to connect EHRs) so I can’t actually complete what I’m doing. Has never worked well, but is now appearing fully inoperable lol. I desire wholeheartedly to contribute to research just let meeeeee :)

by Bkerensa

AllofUsResearchProgram is using more storage than any other app on my phone over 18 GB of storage. I reached out to All of Us support about the excessive storage usage and they said it’s working as intended. Aside from this AllofUsResearchProgram regularly logs me out and doesn’t seem to live up to its full potential.

by Crisamar

I had to call their support a couple of times already. AllofUsResearchProgram keeps denying my password and I have to keep resetting. But if you reset from AllofUsResearchProgram , it doesn’t send you an email to reset. You still have to call the hotline. Practically a useless app if you can’t even get in >90% of the time. This will be one of the biggest obstacles to making this research successful in terms of getting participants information updates on the go.

by Pb5172

As reported by multiple users over the last several months, notifications cannot be cleared. If I get a notification, I’ll open AllofUsResearchProgram and take care of whatever study information I choose to participate in. However, once I’ve seen the notification I cannot delete it from my inbox or turn off the notification icon on AllofUsResearchProgram . I will be deleting AllofUsResearchProgram from my iPhone until this is fixed. If that causes me to miss more studies so be it.

by Anynyalulu

But then since the last update, I am not able to get anywhere with AllofUsResearchProgram anymore. Was working fine a few weeks ago. What happened to AllofUsResearchProgram?

by Stuz5000

1. Cannot complete the country of origin question as the keyboard does not close.
2. After completing the content in AllofUsResearchProgram and logging in on web (with same credentials) I’m asked to recomplete the 15 minute consent process from the start!

by Kimber 27

Sometimes you are able to log in and participate and other times you may have to delete AllofUsResearchProgram and download it again for it to work. The fitness tracker part of AllofUsResearchProgram doesn’t sync with Fitbit when it should. There’s are lapses of 10 days between my Fitbit info being updated and AllofUsResearchProgram syncing

by Clearvictor

App works ok but I just noticed it is consuming over 16gb of data space on my device. There is no option to delete data or clear cache on iOS. After contacting support it seems the only option is to delete AllofUsResearchProgram 🙁

by Sensee111024

AllofUsResearchProgram should be able to sync with Apple HealthKit and Apple ResearchKit.

The NIH program All of Us doesn’t need to ask for name, social security number, or name of friends if they can’t contact you. There are also more health survey questions that they could ask that could be beneficial to the program.

by JRW*

I like All Of Us as what I rhink they are doing is very important. Syncing HealthKit data was easy. My only complaint is that overtime AllofUsResearchProgram isn’t managing storage well. I recently checked and AllofUsResearchProgram was using 50Gb of storage. Apps sometimes don’t data manage well but this was pretty bad. A simple deletion of AllofUsResearchProgram and redownload solved the problem. Hopefully it was an isolated issue for me and/or one that the developers have or will solve in the future.

by Reneurban

I updated my IPhone software today Also got a call from All of us research team so I opened AllofUsResearchProgram to start the 2 new surveys except after I updated the All Of Us app Now it won’t open I’ve tried several different times today I just get that spinning daisy circle like it’s thinking or loading but it NEVER stops & opens AllofUsResearchProgram so now it’s just stuck & I can’t get into to do the surveys. I wish I could maybe it needs an update to FIX the update???
Thanks

by BubblePump

I don’t recall being asked about service in Vietnam. I read recently that 2/3 of us are already dead, and I have had at least 3 cancers deemed presumptive by the VA. You might want to ask about that issue while there is still somebody left to ask.

by Hodag_64

As a participant in the All of Us study, AllofUsResearchProgram is useful to keep abreast of the overall project. The brief monthly surveys are something I look forward to answering, although 2020 is off to a slow start, with no survey released almost 3/4 through January. If you have a FitBit it can sync with AllofUsResearchProgram , but no Apple Health or, for the more sports focused (alas), Garmin integration. Other platforms are promised for app, but it has been a year at least and nothing added. Add Garmin please!

You don’t get feedback or health information from AllofUsResearchProgram , as it functions more as an aggregator of participant information.

by Jquagga

So in early 2021 at least, AllofUsResearchProgram will sync your HealthKit data up to the AllOfUs program. This is handy as HealthKit can act as the hub for my fitness data from Apple or Garmin or Withings and send that information up to the program. I was able to get AllofUsResearchProgram to sign in and apparently send my data whereas at present, the other AllOfUs app (the white one) won’t log in. I feel the other app looked to have better features and layout but if it doesn’t work, then I believe this blue one is automatically the winner. If it is forwarding the health data and sends me messages when the program wants more information then I think it largely covers the bases.

I am taking a star off though as it needs locking functionality. If someone is using the phone they can just hit AllofUsResearchProgram and it gives full access to your account. I’d like to see AllofUsResearchProgram have a pin/biometric unlock as you’d find with other health apps.

by Use Blue All Of Us App

Had difficulty using apps and was unsure which one to use. At my appointment for blood draw and providing iron sample discovered I needed to use the blue app. Wish it was clearer. I had to log in and cancel my info on white app. Had difficulty logging in so deleted both apps and then set up new account on blue app and had to redo all my questionnaires because it wasn’t showing up in there system when I used the white app.

by Cami-145789

What a great research study that connects individual health and genetics with science to give back by helping find treatments and cures with precision medicine. Happy to be apart of this program made easy to join via AllofUsResearchProgram!!

by Melboogie3059311

I joined this study to hopefully help myself and other in the future. I suffer from a few illnesses. I feel AllofUsResearchProgram and the study is a beneficial for everyone. I was invited to try the Fitbit program. I’m new to this device. Upon set up I am curious to see my first set of results.
I did have a problem completing my Fitbit order. I called and although I can’t remember her name this employee was very patient, professional, extremely knowledgeable and had a great personality.
I will update my Fitbit experience after I get the hang of it.

by Dini7775

AllofUsResearchProgram is fine. Most of the critical reviews are outdated and now factually incorrect. But I am confused because there is a newer app that seems almost same. I did not download that because it made me nervous— maybe it is fake? There should be an explanation for both apps, for why there are two apps. And the newest update note for this one (the much older app), for May 2020 says there is now a new agreement concerning DNA data. But I don’t see it. I gave samples a VERY long time ago (I was one of the initial group of participants) and I am very eager for any info from my samples!! The missing new agreement form makes the wait and anticipation more frustrating.

by Steiner67

I’m excited to see what future health care problems we can solve with this program. AllofUsResearchProgram is easy to navigate and allowed me to fill out the surveys on my own time