Monday in the Wall Street Journal Health section was an article titled “How Patients Really Can Help Heal Themselves.” That obviously grabbed my attention and the article surprised me by saying something my husband and I have discussed for a long time. The need for patient responsibility for their own health. Today one of my patients thanked me for explaining so much to her and said no one has ever explained this like you did. I love and hate to hear that. Yes it’s flattering that she appreciated my efforts but really isn’t that what all doctors should be doing? How will patient’s “buy-in” and follow your guidance if you don’t explain it?
Examples the article cited for being an “engaged patient” were fairly rudimentary but still worth repeating:
1. Bringing a list of questions to your doctor appointment.
2. Always mentioning your medication allergies to the doctor or staff even if not asked.
3. Comparing your medication received at the pharmacy to the order given by the doctor. (You’ll need to write down or copy your prescription before handing it in or ask for a copy of what was sent in electronically).
4. Maintaining a copy of your own medical record.
The article claimed that of the above 4 things that 50%, 40%, 70% and 29% were doing that currently. So this inspired me to add some more suggestions to the list and I thought I’d put them in order from basic to more complex and less and less necessary but just my thoughts. First of all I think the first and most important thing a patient could do to be more engaged is to always carry a list of their medications and allergies on a pocket card in their wallet. Write it in pencil or do it on the computer and print a new copy every time there is a change. In Peoria and many communities, you can get the “File of Life” that comes with a folding, pre-printed medical summary including people to contact in case of emergency and your medication list and allergies all folded up in a red file and a duplicate one that is slightly larger and magnetic to keep on your refrigerator for the emergency medical tech’s if they have to pick you up in an ambulance. They are often available from the Fire or Police department. I used to get them by the box but when I ran out and asked for more all they sent me was four of them in an envelope. Here’s a picture of the File of Life.
FILE OF LIFE
Then I agree with a copy of your medical record and would also suggest keeping it in electronic format saved on multiple different media storage devices and/or computers. I also considered when we first went to electronic medical record purchasing wristbands with USB storage for all the patients. I thought that would be a great way to encourage their participation and make up for the delay in their care it caused for at least 6 or more months. However, I ordered a couple and none of them lasted very long before braking. I still think it’s a great idea though and maybe the technology has improved.
One of the biggest changes in the past 5 years is that your primary care doctor is no longer always included in the loop when you see other doctors or go to the hospital. It doesn’t matter if they ask you for your doctor’s name and say they’ll send us reports. They no longer send us anything! What they mean by we’ll send it is if your doctor has access to the hospital electronic medical record and you tell them you were there we can go online and retrieve the information. But only one of the three hospitals in Peoria IL currently send us notification that you were in the emergency department and I suspect that has recently stopped when they merged with another one. So assume your primary care doctor doesn’t know anything about your visit to the emergency department until you inform them. This is even more true now for any specialists you see or the urgent care settings. Some of the specialists are now owned by the hospital and also send the letter they used to send via fax or mail to the office now is parked on the hospital electronic medical record also. So again if I don’t know about it ahead of time I won’t have it for your visit. I can go online in the room and get it but that takes time. So not only should you let us know but you should let us know when you call and make the appointment. That gives us more time to get the information for your upcoming appointment. Then when you check in at the front desk ask if they remembered to pull the information. When the assistant puts you in the room ask again. That way if you have a wait before seeing the doctor that time can be used to pull all of this other information and not cause the doctor to fall behind trying to navigate these other systems.
It can only hold so much!
Something that is overlooked and rarely talked about is that the doctor used to enter the room and use all of their critical thinking skills to solve your health problem. Now as pointed out so wisely by a Nurse friend of mine, your healthcare providers have to use a good part of the brain to figure out this computer program in front of them as well. If they also have to pull information from one or more hospital sites and find the labs and x-rays and specialist notes they are really going to have less brain left to figure you out. No one wants to say it out loud but the older we are the harder this is also. Yet the physician gains all of this practical knowledge as they age so to chase them out of the system isn’t doing anyone any favors either.
So it also means that the patient today who commented you remember last year when I broke my arm was really assuming a lot. I looked back through the last two years of notes and there was nothing about a broken arm. She mentioned it so casually and went on to other things so I didn’t even get a chance to say “Broken arm?” Plus I have a feeling from knowing this person that when she heard I didn’t remember she would be insulted and that’s assuming she told me. She may have even assumed I was copied by an ER or specialist. I was not. I looked for 30 minutes today after finishing with patients in the clinic and could find nothing regarding a fracture of any kind. I could log on to the 3 hospital sites and maybe find it but at this point I was exacerbated and decided to put a staff person on it. I don’t see 30 people a day like so many physicians. I see 12-15 on average. But I still can’t write down every single thing that is said in the room. I would love to see technology developed that actually records our conversation and allows me to edit it later quickly into a note. So my last point is that as a patient please remember you are one of 12 to 30 people that doctor will see today and one of 2000 to 5000 visits they conduct this year. That means if you just mention something briefly chances are it was missed. If you feel it’s important it bears repeating and even bring documentation with you. So consider bringing a list of everything that has happened medically or even important life events since your last visit on a peice of paper for the doctor to keep. We scan it all in and it really helps to job my memory. But also remember that if you don’t want certain information to be a part of your permanent medical record that could be released with your permission to an insurance company or another physician then say so and write CONFIDENTIAL on the top of the paper. I have a folder in every chart for that information. But don’t tell me something of vital important and then ask me to not document it in the chart. I really can’t do that. I would suggest presenting it this way. “Doctor, I’m not saying I have this concern, but if I as a patient had an older brother and my father both had Parkinson’s Disease how would I monitor myself for development of that? Again I’m not talking about myself.” (wink wink) I would probably still put the family history in the chart if the patient affirmed this was really his family history but I would not write in the patient had concerns about this if worded this way. I would still give him the following advice “Well, if I had a patient like that I would watch for a tremor of the hands at rest and reduced arm swing with walking…” It’s sad but patients do really have to watch what they ask about if it’s not a current concern in this day and age if they’re planning on applying for life insurance in the near future.
So it’s important to remember that with technology racing ahead that medicine is still supposed to be about the physician-patient relationship and all great relationships take two people!