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Dear Doctor: Empower The E-Patient

By: Lori Puente; Published: March 7, 2012 @ 11:25 am | Comments Disabled

My plea to healthcare professionals is this: Help patients empower themselves.

The Internet is here, and here to stay. Google, Safari, Yahoo, Bing, Firefox, Internet Explorer, you name it, we are going to turn to the Internet after our doctor’s appointments to look up the things you told us.

When we first receive our myeloma diagnosis, it typically happens during a 20 minute conversation in which we have just been run over by the proverbial bulldozer.  We didn’t hear half of what you said, and what we did hear, we didn’t understand.

So instead of being annoyed about how patients are getting all their information from online sources, how about embracing the fact that we are doing what we are supposed to do: educating and advocating for ourselves. You’ve been advising us to do this for decades.

We still need you and your expert guidance. But how about this: Direct us to the websites that you believe will help us to get started in understanding our disease and treatment options.

Empower us.

Don’t let us flounder out there in cyberspace and Google-land. Sure, we are still going to venture out beyond what you recommend, but help us to get started. Started in the right places with current websites that will help us to answer the questions you answered, but which we couldn’t comprehend in your office.

Yes, we will come back with more questions, but we will anyway. How about intelligent questions because we answered all the easy ones by reading the websites you suggested we visit?

Help to guide us, knowing that ultimately the decisions need to be ours. You’ve been telling us this for years also.

There are some fabulous websites out there now that will help newly diagnosed patients begin the arduous journey of understanding multiple myeloma and the treatments you are recommending.

There are wonderful blogs out there to help us have hope.

There are online support groups that might surprise you with their care, intelligence, and support from complete and utter strangers from around the world.

There are the e-patient health websites that are consolidating sound blogs, websites, and articles to empower patients in their search for others who are on the same journey.

We really do need you to embrace and join us in full, smart, intelligent utilization of this tool known as the Internet. Help us learn how to use it properly and simply, as we negotiate our way through the haze.

If you can’t do it, then turn to your very able staff.  Ask your oncology social worker to take on the task, or your nurses. Ask for volunteers in your office to take a cancer you treat. Ask your seasoned patients. Trust me, they can rattle these websites off in two hot seconds and would be happy to tell you.

There are excellent caregiving blogs, patient blogs, and sponsored websites out there now. Have someone whittle it down to the 10 best ones for you to take a look at.  Peruse them and see if you think they are “safe” for your patients. If you don’t have time to do that, just get the list printed off and tell your patients that your staff and other patients put together this list of websites that might be helpful to them. They will love you for it and become educated, articulate, compliant patients! Don’t worry if your patients are elderly, their kids will look up the information.

Make it part of your consultation. Give us something to do. Our whole life has just been stripped away from us, and we are swirling around in utter emotional, physical, and financial chaos. It’s an efficient, caring way for you to “hold our hand.”

Empower this new e-patient who is now in your office looking to you to pull them out of the fear and turmoil they find themselves in.

This is a guest opinion article by Lori Puente. Lori has been a caregiver for her husband Dave since he was diagnosed with multiple myeloma in June 2008.

If you are interested in contributing an opinion article for publication by The Myeloma Beacon, guidelines can be requested by emailing .


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