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A Special Guest Blog from Our Friends at
the Lance Armstrong Foundation

Our friends at the Lance Armstrong Foundation are conducting a short and easy survey on electronic medical records and they have asked us to get the Army of Women involved. It’s a simple, deidentified survey and it will take you 10 minutes to complete. See below for more information.

A special note from the Lance Armstrong Foundation

The old ways of maintaining medical records are changing. Soon, your records will be stored and updated electronically. But who decides how these records will be used? Where and how are the safest ways to store this information? Can safe, electronic health records improve your health, and the health of the nation as a whole? Decisions are being made now about how electronic health information is stored and shared.

LIVESTRONG is working to ensure that the voice of people affected by cancer is heard and part of the national dialogue. At LIVESTRONG we believe that safe and effective adoption of electronic health records and the electronic exchange of health information has tremendous potential to enhance the quality of care, engage patients in clinical decisions and facilitate research for improved health outcomes. And we also want to know what you think.

Will you take this five-10 minute survey to provide the point of view of people affected by cancer?

We believe that you—people affected by cancer—should be empowered to make well-informed decisions based on facts and data. That’s what patient-centered care should be all about. And that is why this debate is so critical to us, and why as other companies, government agencies and groups are looking at how to best adopt electronic health records—we are want your voice to be heard.

Click here to take part in this important survey.

Thank you,
LIVESTRONG Mission Team

Sue said...

After filling the whole thing out, the site was unavailable. I will certainly never try to go through all those pages again.

Lance Armstrong’s foundation appears to not care a hoot about incorrect information in medical records, this incorrect information being used to refuse patients insurance/medical care, the protection of personal information, that HIPPA makes it impossible to share information between medical institutions (or that’s what 2 of my local doctors tell me), or that the for-profit companies who want to store this information are planning to see it for profit.

Sue said...

Sorry - that’s SELL it

judith said...

Had the same experience as Sue. Sorry to say, but it was a waste of my time.

Dr. Susan said...

I wish I had read this blog before I did the survey. After I completed it, I had the impression that it was not accepted. While I liked the idea of being asked my thoughts about electronic record-keeping, I found myself unable to answer several of the questions because I do not believe anyone can guarantee confidentiality or security of electronically stored records that are shared among providers. I do not know how far-reaching the intent of sharing will ultimately be and do not think anyone can assure us at this time of how far-reaching such sharing would be. How might someone who wanted to opt out later be assured that their data had been fully retrieved and removed? The survey did not inspire me to include as much commentary as I am now providing become some of the questions were too cut and dry and did not seem to acknowledge the grey area that exists.

Another concern I have is that one of the questions asked had to do with whether patients should be able to electronically share the emotional/mental health issues. As a clinical psychologist, it concerns me to think that patients may begin to electronically send doctors emotional updates. While patients should be able to tell their doctors if they are upset, can they be assured of a prompt and appropriate response or is it likely that such messages will get lost in the electronic records and make this feel impersonal and far less responsive to their needs? How would it be determined which of the providers with access to such messages would respond? If a patient wrote in saying she was depressed, would all of the providers be obliged to respond? Are they all qualified to do so? Would some send a depressed patient reprints of articles on the treatment of depression, making some patients, who are seeking a personal response, feel even more depressed?

Colleen said...

Right now, my biggest concern about the survey is that, when I tried to submit it, having spent a lot of time on it, I think it just went no where. I got an error page. So, now my responses are probably lost, and it makes me wonder about what can happen to electronic health information. Could it just end up floating around in cyberspace? I see from reading other comments that this livestrong thing was a real waste of time. I agree.

Dr. Susan said...

Not to be totally negative about the survey and the concept of electronic sharing of medical records, I definitely see the potential benefits of this since it is extremely difficult to accurately convey one’s complete medical history to new providers, even if one has not been ill. How many people recall the numbers on their blood work from previous years for example? If all blood work was saved in one place, it would be easier to compare the information and to detect trends sooner and to not be as concerned by quirky numbers that appeared only once, probably because the person had eaten something unusual for dinner the night before.

How can security of these records and confidentiality be assured and what can be done to see to it that the providers who most need the information are the ones who receive it in a timely fashion, such as mental health professions receiving reports by patients about depression more immediately than their radiologists, for example? Would all providers have to review all of the information that is in these constantly updating records? Must I as a Clinical Psychologist therefore learn what it means that someone has had an unusual surgical procedure, for instance, in order to be confident that I am doing a good job in behalf of that patient? I am not sure what I would do with all of the information I would be receiving and whether it would be beneficial to the work that I do to have it all unless/before the patient wanted to give it to me.

Kristin said...

I’m sorry I took the time to complete it, as I too got an error message. While I can see that there would be benefits, I am very concerned about privacy and security issues.

Lisa said...

I spent my time to try to help with my opinions and I, too, received an error message. I don’t know if my responses were received or not. I find it ironic that this occurred after many questions on electronic records and confidentiality. What would happen if a patient were to receive this response while trying to communicate with a healthcare provider??

Katherine said...

This was a waste of time. I had the same experience as my cohorts above. Yes, how ironic that a survey on the efficacy of electronic records is technologically defective.

Elyce said...

I sent in a comment letting TPTB know that the “done” key leads to a “We’re sorry” page. Pretty pitiful, that.

Lynn said...

Same experience-filled out the survey and then wasn.t excepted-perfect example of why electronic medical records should not happen-they aren’t safe-look at the world of identity theft-as long as there is money to be made, people will do whatever they have to to get information electronically to use for personal gain-it probably will happen anyway but it will not serve the common good-our health system is broken!!!!! (I am a health care professional married to a physician)

Cheryl said...

I got the same “error” message–disappointed that it was a waste of my time. But as an RN practicing in acute care, I can see that the EHR can be invaluable to patient safety. Unfortunately as with anything “out there on the Web” unscrupulous people will find a way to access private records. As for insurance companies denying coverage based on EHRs, that practice will soon be illegal. No insurance company should be able to deny coverage of pre-existing conditions. As a breast cancer survivor I would hate to lose my coverage just because I had a Stage I cancer that has a statistical survival rate of 83% after 10 years!

Elizabeth said...

Is this an indication of electronic records capabilities? It should be embarassing for both Livestrong and Army of Women that so many people wasted their time, as I too did, on a site which is not active. I guess I’d rather speak w/ my health care providers in person than suffer the inadaquices of the electronic world.

Marcia said...

I, too, received an error message after completing the survey and am disappointed that my effort to contribute to the cause may have disappeared into nothingness. Additionally, I am concerned about the confidentiality of the information I provided. I just don’t feel confident about the privacy of information submitted and/or accessed on the internet. However, after experiencing firsthand the loss of my personal medical records from twenty years ago, I definitely feel a more efficient method of recordkeeping needs to be established.

Ellen said...

I got the same message, “WE’RE SORRY The page you are trying to reach is unavailable. Please visit our home page or let us know how we can help you.” Is the message coming out in error or did the responses really go nowhere? If there is a problem with the survey, it should be disabled so more people don’t waste their time.

Jan A said...

Likewise. I received “we’re sorry” and that made me feel sorry too!

Jennifer said...

I actually had taken it before but through the LAF FB page and didn’t have any problems. I’m sorry that you’ve all had such a bad experience.

Judith said...

The “we’re sorry” message simply said the page I wanted was unavailable; it did not tell me whether my 10 minutes of dedication had been submitted successfully (after reading others’ comments, I assume it hadn’t been). Talk about turn-offs for future surveys! (I actually had a like experience with the last survey I took for Army of Women–two strikes!)
And while one question dealt with cancer survival times–and presumably others were based on this–there was no opportunity to explain cases such as mine–20 years post-breast cancer, 3 months since my squamous cell ca excision.

Joann said...

I regret not having read this blog prior to spending tons of time answering all questions thoughtfully. Never again! At the very end received “WE’RE SORRY! …..page is unavailable…..

Dr. Susan said...

Though I expressed some negative opinions above about Electronic Medical Records, I do not fault Army of Women for the failure of the survey to work (it’s a LA Foundation survey) and hope that Judith will rethink her “2 strikes” stance. These 2 Foundations are doing good work and need our support.

I admire groups that aim to enlarge the pool of potential candidates who can participate in cancer research and who bring research opportunities to us all. Can you think of a better way to learn what is causing these cancers?

As we see above, no one reads the blog first so, each of us has had the same frustration. I am sure they’ll fix it soon.

Let’s cut them some slack.

Mary Jane said...

I,also,took the survey and received an “error message”. If an error message appears in the survey, what’s to stop the same from happening in my electronic medical records?

Patricia said...

Me, too, on the “We’re sorry”. I should have read the blog first. I guess this tells us there is more work needing to be done before anyone’s records go into cyber-space. Still too much room for error.

Ruth said...

Thanks so much to all you who took the time to take the survey. We have fixed the issue that you were experiencing, which was that after the survey you were directed to a page that no longer exists on LIVESTRONG.org, which was recently re-designed. However, none of your data was lost, everything that was entered was captured and stored. We apologize for any inconvenience this survey caused you. Please know your efforts were not wasted. Thank you to all of you who participated!

LIVESTRONG Mission Team

Hedi said...

On behalf of the Army of Women, we want to thank everyone who participated in the survey. Ruth from the LIVESTRONG Mission Team has posted a comment regarding the survey issue and has explained that the error has been fixed. Just to reiterate, no data was lost; all information that was entered was captured and stored. We extend our most sincerest apologies for any inconvenience this survey caused you. We appreciate your dedication and hope you continue to support the Army of Women. By participating in the LIVESTRONG survey, you will help aid in the development of vital resources needed to improve the future of science and research.

Hedi Jalon - Army of Women, Community Outreach Manager

Carol said...

I agree with all who responded to this survey. To me the burning question is how can anyone guarantee complete security of electronic records when there are so many hackers around the world who are willing to break security? I’m sure there are legions of those who would be very happy to seel info to the highest bidder, including the government and insurers. I don’t trust my personal information to the internet, and certainly not my health records. My records are always available to me through my doctors’ offices, the wonderful breast health center I go to and the hospital. I try to keep all records and reports and my family knows where they are filed.

Susan said...

Thanks again for all your comments for our friends at Lance Armstrong. It is just these issues that they want to know about. They are trying to figure out how to make sure that patients and their concerns are represented in the electronic medical records discussion. The administration is investing a lot of money in developing this system to improve billing and accountability in health care but so far have not included the patient’s voice and concerns. We and the Lance Armstrong Foundation feel that we have to have the patient at the table. Your responses here and on the survey will help with this process. Thanks again, Dr Susan Love

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