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LIVESTRONG staffers Ruth Rechis-Oelker, Heidi Adams, Ron Kolenic, Helen Knost, Chris Brewer and volunteer Rob Sartin talk about their experiences gathering medical records and how electronic medical records would help them remain in control of their health. LIVESTRONG advocates for the rights of patients to have control of their records and keep them in a safe, convenient and electronic format. We ask you to leave your comments and stories about medical records below.

E-Records Round Table from LIVESTRONG on Vimeo.



17 Responses to “Electronic Medical Records Roundtable”

  1. Jere Carpentier says:

    I have had the advantage of having electronic records for almost 10 years. I cannot imagine going through any health issues without it. It gives me the advantage of going back and “comparing notes” from previous medical issues to current ones, it allows me to view test results timely (especially with my Blackberry), no matter where I am, and it gives me a better understanding of what is noted in scans versus the typical answer “everything looks fine.” I feel very involved, like I should be. I am very much a partner in my health and in determining what is working best for me personally.

  2. Mikki says:

    We have electronic records, however, when my husband was being seen by a doctor outside of the group, we actually had to print each page of his medical report and pay a fee for the copies! It was insane with over a year of treatment,I can’t imagine if it had been longer.

  3. Jack Cary says:

    This comment is probably off subject but when I went through testicular cancer three years ago, I had a recurrence after my first radical orchiectomy surgery and radiation treatment. During the time of my second surgery the urologist kept mentioning to me how my case was a bit unusual and was being openly discussed at various meetings he attended. I didn’t think about that too much but I just wonder how much of my medical history has been made public without my consent or knowledge. I speak openly about my history, feeling blessed I am here to discuss it but I feel that medical records, electronic, verbal or in paper form should only be made public with the patient;s consent.

  4. Cindi Hart says:

    In Indiana we have a Health care information exchange. (Regenstrief Institute is the provider, IU Mecial Center, Clarian Health, St. Vincents, St Francis, Community Hospital, as well as other hospitals across the state participate)

    It’s the only place in the US where institutions actually SHARE electronic medical records across the board to decrease the number or repeat testing and increase continutity of care.

    It is here and it is real.

    As a patient, I appreciated seeing the print outs of my CBC’s to be able to track the chemo’s effectiveness. Lab values, Cat Scans, radiology images electronically stored increases the value, decreases the time in retrieval, and increases the view and continuity of treatment.

  5. Laura Grant Evans says:

    All your guests have made excellent points and our extensive experience with our son who is a 5 year survivor of survivor of AML support every example given by participants in today’s forum. His treatment involved two long hospital stays, long term follow up will continue throughout his life by many different specialists. Cancer is in our family medical history as well – it is troubling to think because our family history exists in separate paper files all over the globe, connections and commonalities are being lost.

    During the most intensive phase it was helpful for us to keep notes in a binder but frightening when too often it was the only thing we had to point specialists to when there was an omission of information in their records. We didn’t know what was critically important and what was not at the time as neither parent is medically trained.

    Another point I would like to add to those made by the panel members is the fact that most written records are illegible – ever try to read a doctor’s prescription? Electronic records are the standard in every other facet of our lives because of their accuracy, transportability and universal applicability. The primary reason this is not a standard with medical records is the enormous cost associated with launching such a requirement of all physicians, hospitals and insurers – people will have to physically transcribe written records into a database – you can imagine the cost! At a time when many fellow Americans are searching for employment opportunities, what a useful and important government job initiative this could be.

    I am convinced there is a cure for cancer lurking within survivors medical records if only we had the tools to easily manipulate the extensive data that exists in all our cancer experiences. Thanks for organizing this important discussion. Live strong!

  6. Hannah Vogler says:

    So glad to see this – I am helping plan a Health Information Exchange in Arkansas for electronic sharing of health info, and it’s just great to see specific and personal examples of how this will help patients and why it is needed.

  7. Chris Walsh says:

    Outstanding exchange of ideas! I am starting an organization that will focus on optimal retrieval of medical records, and the best way to organize and use this information by patient, family, caregivers, etc. My biggest challenge is not retrieval, but just getting people interested in collection, organization, and keeping records current. Accuracy of records is as important as access. Many physicians use billing codes to determine diagnoses, in order to get paid for care. This can greatly skew electronic medical record information. We are teaching patients to build an “attack team,” and advocate for themselves. Would be willing to share information as LiveStrong got me out of colon cancer twice in last four years. Thank you.

  8. Electronic medical records is a life saver. I have seen the benefits of this system both in my personal treatment and in dealing with my patients. It is amazing to see all info in one place, and not have to wonder what is involved in a person’s history.

  9. Mary Kenney says:

    There are two edges to every sword. Electronic medical records can be a life saver: they can also be a disaster. My own experience is that a secretary blended my electronic medical records with another person who had a similar name and it was not until a disparity in insurance company information arose did the medical professional association (with hundreds of medical personnel who had access to this) finally listen to me and change it.
    Cell phones have a place to insert emergency medical information under ICE contact listing medications used and people to contact which I feel is safer and if updated more accurate; especially if you are out of town. Having said that I feel electronic medical records are here to stay and can save lives but, they must utilize some sort of key/system to insure only YOUR records are in your file and lets face it, there is no way to totally secure this information.

  10. Robert Payne says:

    I have no real problem with the ’safe’ transfer of medical records. In fact, it’s more time saving and cost effective. Any Doctor that I currently see (there are 4 or 5) have the access to any medical information and or tests I’ve had done within the health care system. That’s good!

    However, I must stress the word ’safe’. Recently my wife, a breast cancer survivor received a letter from the health care system in which she was treated. It stated that although her personal information “is of utmost importance”…and the system takes “significant measures to protect it”, a hard drive used to back up computer data was lost with all her medical information on it.

    Within 12 hours of receiving this letter the local news reported on the story. Is this ‘utmost importance’ and ’significant measures’ protecting her personal information now? I still haven’t received a letter to inform me of this theft. However, I wouldn’t be the least bit surprised to get one.

    I once again stress…safe, secure and responsible record keeping. Most of all, we need to have the foresight to realize these problems come up and need to deal with them beforehand!

  11. Dan says:

    Electronic Health Records is a beneficial endeavor on many fronts, but faces many challenges. The need for EHR was raised during Hurricane Katrina, with so many people displaced by the disaster. People did not know what prescriptions they were taking, and could not adequately share their medical information. We need EHR to provide efficient and accurate medical history. The problem is deciding on standards by which to share this information and getting buy-in from Health Providers. Information is protected by HIPAA.

  12. Bobby Gladd says:

    I now work with one of the CMS Regional Extension Centers promoting health information technology adoption, regarding which I am thoroughly evangelistic. I have written about this on my blog (and health care reform more broadly in rather exhaustive detail across my last 5 posts) at bgladd.blogspot.com. My major concern with the HIE (Health Information Exchange) effort is the heterogeneous, regional, and duplicative nature of the effort. We seem to be addicted to unwarranted hypercomplexity (just look at the “health care reform” bill). Notwithstanding, the widespread deployment of electronic medical records systems at the clinical level is a no-brainer, a must-do for improved care (and the net marginal costs are really nil once you accurately account for the cost of existing paper chart systems).

  13. Doc Ladyblade says:

    As a physician I’m glad to see this discussion, but I’m afraid it is 10 years too late.
    EHRs are tied to the electronic billing system that a doctor HAS to use. Since there is no standard for the billing system there is no standard for the EHRs. Too much money has already been spent and too much data entered to make it worth while for any doctor to change their system just to make it “talk” to some one else’s EHR.

  14. Dr. Monty says:

    They are great within a healthcare system that is connected with the same EHR system. Absent that the EHR systems do not talk to each other and so they are of little benefit. Hospital to Hospital and doctor to doctor in a town that does not share the same system makes for impossible transfer of information. Where that does occur the cancer patient and all patients benefit.
    Having the government mandate and oversee the EHR is not a good idea. Allowing them access to your personal information is an invasion of the doctor patient relationship which never should be breached.

  15. christina says:

    I see a need for EHR. I also agree with others’ comments, in particular the obvious need for a national standard system whereby information can be effectively shared by doctors and hospitals everywhere. I have had experience with my doctors not being able to access my EHR because they work in different systems and it caused (and still causes) mistakes.
    I am also very concerned about privacy. I do not want any government body or any current or future employer to have access to private and protected medical records. All current HIPPA laws should remain in effect.
    While there can be significant cost savings with a good EHR system in the long run, as well as obvious benefit to patients and providers alike, I think it will take a VERY long time and a hefty financial investment to implement such a system.

  16. mtormey says:

    I have a question. Started to put way too much info here. So, the question, would like to hear from survivors about whether marijuana helps with after effects of harsh chemo? That is, long term effects such as ongoing stomach pain. This is a conversation in our family. This is smoked mj, bearing in mind the aftereffects of chemo drugs on lungs as well. Gastro docs have not been able to help.

  17. Retired Vet says:

    VA just posted results of a study reporting significant savings and improved care from using electronic records.

    http://www1.va.gov/opa/pressrel/pressrelease.cfm?id=1880

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