Dear Doctor: Empower The E-Patient
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 .
The Myeloma Beacon has a multiple myeloma links directory that contains an extensive set of links to myeloma-related websites. Included in the directory are many of the kinds of websites that Lori mentions in her article.
If you wish to let us know about other myeloma-related links that should be added to the directory, you can do so by clicking the link at the bottom of the links directory or by emailing us at the address found on our Contact Us page.
We would appreciate, however, if this comment section not be used to list or otherwise promote specific websites or other lists of websites. Instead, we would hope the comments would focus on the general issues that Lori raises in her opinion piece.
Thank you!
Hi Lori...great article! Considering that most newbies have not heard of multiple myeloma before, the need for information sources is very urgent for them.
I got a list of onlne resource sources put together for an education conference that our support group put on in conjunction with the cancer centre last September. We worked with them because all patient records are confidential, and the cancer centre was authorized to send out invitations to those who had been treated for amyloidosis, myeloma and related diseases. Thus we were able to contact those individuals without invading their privacy!
Nancy, thank you for your encouragement and good job on taking the bull by the horns in your local support group!
Lori, I think you nailed it when you say this is an unsatisfied need. As a patient you are left to interpret what the doctor says at your visit, and in your daze are expected to find this satisfactory education. The reason may be nothing more than the doctor is just talking over your head at this point, or you are just in the initial state of shock, or just plain too sick to comprehend. If you are in a good center, you are allowed to look at the data or brochures that they have available. But, I think that this e-summary you suggest is something that all new patients need, so that when the whole thing finally sinks in, that you can take your time, and laptop or iPad and learn at your own pace.
Lori - What a great idea! How much easier it would have been for me and other patients if only the doctors could have supplied ths information. Could help keep people away from the out of date information. I am going to talk to my doctor and see if I could put something together that he would be willing to distribute. Thanks for your efforts in the MM community!
Excellent article!!!!!
I agree totally. At diagnosis you are in shock and don't know where to turn and my EX-doctor told me not to look online or read the blogs. The blogs is where I got my most useful information! Thanks for the article.
I hate to be the wet blanket, but the truth is that there is an amazing array of information available on the Internet. The various myeloma non-profits offer a tremendous number of resources to patients and care givers alike. There are information groups on Facebook, Twitter, Google+ and Yahoo. There are literally hundreds of blogs which are dedicated to Multiple Myeloma, and online news services can be filtered to present the latest stories in the media. That says nothing about this fine clearinghouse of information, the Myeloma Beacon. (Many news articles are sourced from the Beacon, by the way, meaning readers here often see those article first!)
While I know from experience that we want to have all of our questions answered by our doctors. But here are some things to consider about that.
All patients are unknown quantities. The answers to the questions we ask are actually generic enough that better and more complete answers are available on the Internet.
Since much of the information about Multiple Myeloma is reasonably generic, you would have your physician repeating the same information over and over again as each of their patients asked essentially the same questions.
For questions specific to our own personal cases, our doctors are already providing those answers --and I've yet to hear of any who wouldn't repeat their answers or delegate staff members to do so as many times as it takes. The reason is that this information is usually confined to the specifics of your treatment plan and schedule, or speaks to your pain control. If you do have a doctor who won't answer those questions, then you should seek another who will.
I just typed "Multiple Myeloma" into the Google search and it returned over one and a half million results. So the online information you desire is out there, just waiting for you and others to read it.
My point is that there IS a lot of information on the internet but the medical profession typically tells us not to go on the Internet or makes snide comments about using the internet to learn about our ailments. There is such a wide array of good information out there now (which was not the case about 3 years ago) that I would like to see the medical profession come into present time on the Internet as a tool and embrace it more. In addition to perhaps a pamphlet or booklet, also provide a patient and their family with reputable websites.
The information on the Internet is a double-edged sword. You get something up-to-date and something else very stale. One good example is the subject of prognosis. That's why patients and their caregivers are encourged and discouraged to look up on the Internet all at the same time. I believe Lori is suggesting to enlist the doctors to provide filters on what we see so we can reap the benefits offered by this great tool with limited downsides.
Yes, Ben. That is my point. Thank you everyone else for your wonderful comments.
Nothing is perfect. I had four doctors when I was diagnosed. One of them was a physician leading the team that set the protocols used worldwide for high dose chemotherapy. He works with the Seattle VA in concert with the Seattle Cancer Consortium --one of the finest oncological groups anywhere. But he and my local team all told me that I had six months to live. That was in 2008 so the fallacy of their predictions should be obvious. Whether the physician or the web, all information is a two edged sword and may or may not be accurate.
On the internet, all information is dated, and so you can tell how new or old it is. Yet the age of information isn't necessarily an indicator of validity when it comes to MM. Also, opinions vary widely with physicians, and who's to say who is right or wrong, when there's a bit of both in all? If you read articles here on the Beacon, you will find doctors with a wide array of belief sets --some of them more modern and some not, but they are in contrast to one another quite often. So speaking with a physician has all of the same likeliness of being "double-edged" as information on the Internet, except the doctor's words don't come with a date stamp. I quickly add the our doctors are trying their best to work with a disease that is tremendously complex, regardless of how offhand it may seem to be discussed.
I'm not meaning to be argumentative, but I do disagree that doctors owe the greater level of information you ask for. Personally, I would rather my doctor spend his time focused on the array of side effects and collateral issues of his patient's specific cases than spend it answering the many generic questions the newly diagnosed have. Keeping in mind that I had the very same opinion as you in the first year or so of my journey. But I came to understand that my desire just wasn't very realistic for the reasons I've expressed here.
Terrific thoughts, Lori! You can't keep those of us who are somewhat cyber-saavy off the internet, especially where something is as important to us as is our battle with MM. Why not help us separate the wheat from the chaff.
I think that you are right-on-target when you suggest that our health care providers should point us to 'trusted' sites that deliver current, cogent, uinderstandable information. I'm sure that some of their reluctance is that they have no control over these other sites or the information that they convey. My first cyber stop was at the website of my treating institution, UAMS. My physician informally provided direction to some of the other sites that he suggested I look at, but only after I asked him.
After having looked at a lot of sites that don't exactly speak to me, I have created a list of 'go-to' sites that I visit for information, connection, personal stories, etc.
The shocking effects of those first days of diagnosis and what-the-heck-am-I-going-to-do thougts would be somewhat mitigated if our physicians / support teams would point us to trusted information sites. Thanks, Lori!
Bob, I think you are missing my point. I'm asking the medical community to embrace the net as a tool and to stop their patients from seeking information on their disease and instead direct them.
If they are a big myeloma center they will have pamphlets and booklets to give you on myeloma from the IMF and MMRF and pharmas. They are willing and do disseminate information for the patient to digest at their leisure. But more often than not, they will discourage a patient from finding information on the internet, and I'm suggesting that instead they solicit their staff to help direct their patients to sound websites that will lead them to other sound websites.
Some of us are more savvy (Sean!!!!) than others on the research we do on the internet. We know some things are dated, easily, while others do not. More and more, the better sites are coming up at the top of the search engines.
My personal experiences, and that of those who contact me via my blog, are that the medical community is still very anti-Internet. I'm suggesting that it is an unrealistic position, today, now, and would like to see them come up to speed on it.
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