Doctors & patients are saying about 'A-Fib.com'...
"A-Fib.com is a great web site for patients, that is unequaled by anything else out there."
Dr. Douglas L. Packer, MD, FHRS, Mayo Clinic, Rochester, MN
"Jill and I put you and your work in our prayers every night. What you do to help people through this [A-Fib] process is really incredible."
Jill and Steve Douglas, East Troy, WI
“I really appreciate all the information on your website as it allows me to be a better informed patient and to know what questions to ask my EP.
Faye Spencer, Boise, ID, April 2017
“I think your site has helped a lot of patients.”
Dr. Hugh G. Calkins, MD Johns Hopkins, Baltimore, MD
Doctors & patients are saying about 'Beat Your A-Fib'...
"If I had [your book] 10 years ago, it would have saved me 8 years of hell.”
Roy Salmon, Patient, A-Fib Free, Adelaide, Australia
"This book is incredibly complete and easy-to-understand for anybody. I certainly recommend it for patients who want to know more about atrial fibrillation than what they will learn from doctors...."
Pierre Jaïs, M.D. Professor of Cardiology, Haut-Lévêque Hospital, Bordeaux, France
"Dear Steve, I saw a patient this morning with your book [in hand] and highlights throughout. She loves it and finds it very useful to help her in dealing with atrial fibrillation."
Dr. Wilber Su, Cavanaugh Heart Center, Phoenix, AZ
"...masterful. You managed to combine an encyclopedic compilation of information with the simplicity of presentation that enhances the delivery of the information to the reader. This is not an easy thing to do, but you have been very, very successful at it."
Ira David Levin, heart patient, Rome, Italy
"Within the pages of Beat Your A-Fib, Dr. Steve Ryan, PhD, provides a comprehensive guide for persons seeking to find a cure for their Atrial Fibrillation."
Walter Kerwin, MD, Cedars-Sinai Medical Center, Los Angeles, CA
13. “Should I carry a wallet card or a medical ID? I have A-Fib and take Coumadin. In case of an A-Fib emergency, what information should I include?”
According to a paramedic with 25 years experience, knowing about your A-Fib and Coumadin (warfarin) use is “nice-to-know” rather than life-saving, necessary info. Emergency responders don’t normally carry meds to treat A-Fib or blood thinners.
In case of an accident when one is bleeding, techniques to stop the bleeding such as compresses, tourniquets, etc. will be used whether or not one is taking Coumadin.
Credit card-size USB by ER Card 100 pix tall
It’s generally a good idea to carry some form of medical ID in case of an emergency, whether or not one has A-Fib. For example, a medical ID bracelet or ‘dog tags’ is often noticed by emergency personnel.
What information should you carry with you? For a list of the data to include, see our article, Your Portable Medical Information Kit. We also give you various ways to store and carry your information (i.e., a credit card-size USB flash drive and QR code-based helmet sticker). Includes a link to generate a FREE medical emergency information wallet card.
Doctors appreciate knowledgeable, informed, and prepared patients. Each doctor will probably ask you much the same questions. For efficiency, prepare your ‘Personal A-Fib Medical Summary’ and include a copy with each packet of medical records you send to doctors.
• What particular symptoms are bothering you?
• When did you first begin to experience these symptoms?
• Did you start taking any new vitamins, supplements, or prescription drugs before the onset of symptoms?
• Are these symptoms paroxysmal (occasional or intermittent, beginning and stopping on their own), or persistent (present all the time, or lasting at least a week at a time continuously)?
• On a scale of 1 to 5, with 1 being little of no bother and 5 being severely bothersome, how would you rate your symptoms?
• Is there anything that appears to worsen your symptoms?
• Is there anything that appears to lessen your symptoms?
Include other pertinent information such asnames and contact information for doctors you see regularly and why. Type up your summary and attach a copy to each set of medical records you send to doctors. And add a copy to your three-ring binder.
Healthcare trend: ‘The Personal Health Record’ (PHR)
There is growing momentum to encourage consumers to take another health-related step: to maintain their own health records.
The idea behind the personal health record (PHR) is that the more consumers know about their health, the more control they will take over it and the healthier they will be. PHRs also encourage consumers to collect and share more health-related information with each of their providers. For this reason, healthcare providers, employers, insurers, vendors, and the federal government are all interested inpromotingPHRs.
What is a personal health record (PHR)?
Shoe pocket by Vital ID
Credit card-size USB by ER Card
A personal health record (PHR) is a means of storing, managing, and sharing your personal medical information. PHRs can be paper based or electronic. Electronic records can be kept on different media, including personal computers, “smart” cards, thumb drives, CDs, or web-based applications.
Of the two types, paper records may be easier to secure, but electronic records are more convenient.
Before meeting with any electrophysiologist or surgeon, you will want to send each a packet with your medical records, test results and any images/X-rays. (You should be collecting this information all along in a three-ring binder or file folder.) So, how do you gather copies of medical records you’re missing?
Your Right to Your Medical Records
To begin, you may ask, “Do I have a legal right to my medical records?” Yes.
Be aware that while your medical information or data belongs to you (the patient), the physical pieces of paper, X-ray film, etc. belong to the hospital or health care provider.
Patients have the legal right to access both paper and electronic records, to view the originals and to obtain copies of their medical records.
You want to compile a list of the offices you need to contact. (You may already have many of these records in your A-Fib binder/folder and just need to identify those you are missing.)
Begin with a list of all the doctors, emergency rooms, labs, specialists and other health care providers and facilities who have provided you with medical services related to your A-Fib.
Request your prescription records, as well, from pharmacies and health plans. (You may already have online access to this information, depending on your service provider.)
Also, request records of any major medical event from the past two years (i.e., surgeries, medical emergencies, allergic reactions, etc.)
Review Your Records for Accuracy
Before requesting copies, you have the right to review your health records (not just ask for copies).
Your doctor’s medical records staff can help guide you to find the information you are interested in reading. Look over your records to make sure they are correct. Ask questions. If you spot any errors, ask to have them corrected before they are shared with another doctor or hospital.
Make Medical Record-Keeping a Habit: Don’t leave your doctor’s office or medical canter without a copy of every test they performed (if the test result isn’t immediately available, have them mail it to you). Store in a three-ring binder or file folder.
1. You’ll find the instructions for requesting records for each provider in their ‘Notice of Privacy Practices’—you signed and received a copy of this notice on your first visit. (It’s also posted at the facility where patients may see it.) It should provide instructions for requesting records as well as contact information for asking questions or filing complaints. Follow the instructions to request your records.
2. Or, if visiting the medical office, ask for an ‘Authorization for Release of Health Information’ form. You can complete and submit the authorization form in person or take it home. Many medical practices post the ‘Authorization for Release of Health Information’ form on their website for download.
3. You can also write your own ‘Request Your Medical Records’letter (see sample below). The Privacy Rights Clearinghouse offers a sample letter template to help you compose your own letter asking for your medical records. (See sample letter below at end of this article.) Fax or mail your request letter.
Plan ahead: It may take some time for your request to be processed. It’s a good idea to ask when you can expect to receive the information and an estimate of the reproduction cost.
Will You be Charged for Copies?
For hard copies expect to pay duplication costs. HIPAA allows doctors/practices to charge a “reasonable, cost-based fee.” They can charge for supplies, staff time for copying and processing, and mailing costs, if applicable.
For no cost copies, ask if they will copy electronic files to your USB Flash drive or to a disc/CD you supply.
However, they may not charge for the time a staff member spends searching for the record. In addition, they should not adopt a policy of charging a flat fee or charging a patient to view a record.
Note: U.S. state laws may limit the amount the doctors/practices charge for duplicating records.
You’ll Need Multiple Copies
You may receive paper copies, x-ray film and/or electronic records (on CDs or USB flash drive). You can ask for multiple copies or make your own. (For duplication services, check office supply retailers like Office Depot or Staples.)
If you expect to interview three to five doctors, have a packet made for each doctor (better to have an extra packet rather than too few).
As a backup, take your A-Fib binder to your appts.
File Originals and Backup Digital Records
Store your originals in your binder or file folder. Store CDs in binder sleeves or copy to your PC. Make backup copies of any digital records.
Day of Your Appointment
When you arrive at the EP’s office, make sure they have indeed received your up-to-date medical records. As a back-up, bring your own three-ring binder with the originals.
Don’t Forget:take along a pen and your ‘office visit notebook‘.
Sample Letter Format and Template to Request Your Medical Records4
[Your name] [Your address] [Date] [Name of care provider or facility] [Address]
RE: [Your medical identification number or other identifier used]
Dear [Name of care provider or facility]
The purpose of this letter is to request copies of my medical records as allowed by the Health Insurance Portability and Accountability Act (HIPAA) and Department of Health and Human Services regulations.
I was treated in your office [at your facility] between [fill in dates]. I request copies of the following [or all] health records related to my treatment.
[Identify records requested, e.g. medical history form you provided; physician and nurses’ notes; test results, consultations with specialists; referrals.]
[Note: HIPAA also allows you to request a summary of your medical records. If you prefer a summary, you should agree to a fee beforehand.]
I understand you may charge a reasonable fee for copying the records, but will not charge for time spent locating the records. Please mail the requested records to me at the above address. [If you request that the records be mailed, you may also be charged for postage.]5
I look forward to receiving the above records within 30 days as specified under HIPAA. If my request cannot be honored within 30 days, please inform me of this by letter as well as the date I might expect to receive my records.6
Greenleaf, G. Global Data Privacy Laws: 89 Countries, and Accelerating (February 6, 2012). Privacy Laws & Business International Report, Issue 115, Special Supplement, February 2012; Queen Mary School of Law Legal Studies Research Paper No. 98/2012. Available at SSRN: http://ssrn.com/abstract=2000034↵
Personal Information Protection and Electronic Documents Act. (PIPEDA or the PIPED Act). Wikipedia.org. URL: https://en.wikipedia.org/wiki/Personal_Information_Protection_and_Electronic_Documents_Act↵
Protection of personal data. European Commission’s Directorate General for Justice and Consumers. URL: http://ec.europa.eu/justice/data-protection/↵
Reproduced with permission from the Privacy Rights Clearinghouse, Fact Sheet 8. Last accessed October 17, 2014, URL: https://www.privacyrights.org/Letters/medical2.htm↵
Under HIPAA you can be charged a treasonable fee for copying records. You may also be charged for postage if you ask that records be mailed to you. HIPAA allows 30 days for a provider to respond to your request for records, with one 30-day extension for good reason.↵
Your state laws may include a lower fee for copies of records or a shorter time for the provider to respond to your request.↵
When you have A-Fib and you’re taking a blood thinner or other medication, you may wonder if you should carry an emergency I.D. card or wear a medical bracelet.
According to a paramedic with 25 years of experience, emergency measures to stop bleeding such as compresses, tourniquets, etc. will be used whether or not the paramedic knows one has A-Fib and is taking a blood thinner like Coumadin.
But in general it’s a great help to emergency personnel if you carry one or more forms of emergency medical ID. The author of The Patient’s Guide to Heart Rhythm Problems, Dr. Todd Cohen calls it a “portable medical information kit”.
what should be in Your emergency medical information ‘Kit’
Use the online form (with nothing to install or download) to customize with your information. Then, print, trim, fold and add to your wallet or purse.
Tips to consider:
• Laminate your wallet card to prolong its use (an office supply store can help you).
• Why not print a card for each member of your family?
• If you choose a medic alert bracelet with limited space, add the message “See wallet card,” and carry a wallet card with all your medical details.
Additional Ways to Carry Your Medical Information
Money clip from Universal Medical Data
There are many new styles of Medic Alert IDs bracelets and necklace pendants using different materials like waterproof foam, leather and stainless steel. Don’t carry a wallet? Consider a Money clip with compartment to slide in your emergency contact info.
Or, if you carry a paper-based day planner or calendar, add the same information to your address book.
Here are more ways to carry your medical contact information:
Cell phone with ICE contact
Cell phone: Emergency personnel often look at your cell phone contacts list for an ‘ICE’ contact, that is, an “In Case of Emergency“ entry. It’s easy to do. Add a contact named ‘ICE’ and enter your emergency contact’s name, phone numbers, email address, etc. In the notes field, you can add your vital medical information.
Forthe jogger or walker: A shoe tag or pocket with your emergency contact info can be attached to your laces. For cyclists and others who wear head gear, a Medical ID sticker can be attached to your helment.
Shoe pocket by Vital ID
Helmet sticker by Vital ID
High tech solutions: Flash Drives are one high tech solution to carry all your medical information. The specially labeled USB flash drive has a large storage capacity which means you can carry much more information than the conventional medical ID bracelet. Variations include bracelets, keychain fobs and pendants.
USB bracelet from Medical Alert Drives
USB key from Stat Alert
Credit card-size USB by ER Card
QR code tag by Dynatag
The one product that caught my eye is the credit card-sized USB for your wallet. As seen on the daytime show, The Doctors, the tiny, slim USB bends out of the credit card frame and is inserted into your USB port. From there you add whatever documents you want. (Why not create a medical record page for each member of the family?) See The Doctors video clip: http://youtu.be/yt34KwEtrw8
Another new type of medic identification alert is QR code-based medical alert stickers. The QR code is added to a wallet card, pendant or keychain fob. To access the information, a smartphone scans the QR code then links to a web service with the individual’s emergency information.
Remember to Update Your ‘Kit’
Whichever methods you use to carry your emergency medical information, don’t forget to review and update the contents regularly especially when you change doctors, start (or stop) medications or have a medical procedure. Knowing you have up-to-date medical information gives you a little bit more peace of mind.
Patti J. Ryan
Patti J. Ryan of A-Fib, Inc., supports all aspects of A-Fib.com and often monitors Steve Ryan’s new articles—ever watchful of too much medical jargon and when necessary translates the terminology into everyday language. She is also publisher ofBeat Your A-Fib: The Essential Guide to Finding Your Cure by Steve S. Ryan, PhD (BeatYourA-Fib.com), an Amazon.com Top 100 Seller in two health-related categories (order fromAmazon.comand read over 60 customer reviews).
Disclaimer: the authors of this Web site are not medical doctors and are not affiliated with any medical school or organization. The information on this site is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health professional prior to starting any new treatment or with any questions you may have regarding a medical condition. Nothing contained in this service is intended to be for medical diagnosis or treatment.