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Online Patient Communities for the E-Patient: “Betwixt and Between” a New Patient and an Expert

Michael A. Thompson, MD, PhD

29 Aug 2013 2:42 PM

In my first ASCO Connection blog post (10/25/11), I talked about “Participatory Medicine in Oncology” by asking: “What does a healthy medicine and oncology “ecosystem” look like?” I suggested that the e-patient (Empowered, Engaged, Equipped, and Enabled) will be important moving forward in medicine. In a series of three blog posts for the Best Doctors Clinical Curbside, I recently discussed online patient communities (OPCs), as well as online multidisciplinary conferences (MDCs). However, in a recent twitter exchange, I was engaged and challenged by a discussion I had with Suzie Rose (who goes by the Twitter handle of @myelomacinderel) on how self-advocating patients can best engage online.

Here are some excerpts, paraphrased from the original Twitter abbreviations for readability. (If you aren’t used to Twitter, the 140 character limit makes grammar and spelling shortcuts common.)

Suzie Rose asked four physicians on Twitter the clinical question: “Patient progresses with new myeloma lesion during induction therapy for autologous stem cell transplant (ASCT). What do you do clinically?” Three of us replied nearly simultaneously: “We need more information and timing of imaging vs Tx.” One said: “Depends. Sometimes proceed to ASCT, but if florid progressive disease (PD), consider changing regimen first. The response to that from @Myeloma_Doc: “I also agree. But, in general, rarely good to do transplant with disease progression.”

That exchange prompted this question from patient Suzie Rose: “What venues best for complexity? I already know the easy stuff. Your suggestions for a #myeloma forum will be helpful. Thanks.” Myeloma_Doc noted: “This scenario type best reviewed in a formal consult with #myeloma expert.” To which @myelomacinderel responded: “Suggestion for venue where #myeloma case scenarios get feedback. Not a consult. Please help. . .” She also noted that she was “betwixt and between” being a new patient and being a physician expert. She wanted more than basic information as often found on the Internet (even if from a reputable source like Cancer.Net or a myeloma center), and she wanted it personalized to her specific molecular disease. She may also not benefit completely from programs like ASCO’s patientACCESS, which provides free patient access to the ASCO JCO and JOP journals.

When the feasibility of scaling from one motivated patient to a subset of all myeloma patients was questioned, Suzie Rose noted: “Economics rules again. What happened to learning for free? The quest for knowledge.” And @Myeloma_Doc replied that the “Issue is not economics. Important to get full picture to individualize best advice” and “Full picture = patient input. We need the patient for patient-centered therapy.” Dr. Tomasson (@MTomasson) joined the conversation with “Interesting idea…I can imagine ways to make it work.”

Conclusion

So, one thing that sprang out of this discussion was to start a Twitter discussion group on multiple myeloma potentially using the #mmsm flag suggested by Matthew Katz, MD (@SubAtomic Doc) in “Hashtag Folksonomy for Cancer Communities on Twitter”). In fact, a fellow Tweeter (@VincentRK) recommended that I do just that. It still leaves us with the question—how does the Empowered, Engaged, Equipped, and Enabled e-patient find information for independent learning when they already know the easy stuff?

I don’t think an #mmsm tagged Twitter discussion is the full answer, but we are looking to try it out and see what happens. There are examples where this has worked such as the #bcsm (breast cancer social media) Twitter discussion group.

Please join us and give us your comments below…

Note: This was a public Twitter conversation. The participants involved reviewed this blog post and were asked to feel free to comment online.

Comments

Number of Comments: 14
Michael A. Thompson, MD, PhD

Thursday, August 29, 2013 5:34 PM

Just saw this:


The American Society of Clinical Oncology has launched a wiki to engage the cancer community in their guideline development process.


We’ve launched a wiki site to engage you, the #cancer community, in our guideline development process. The new site will provide oncologists, practitioners and patients with an opportunity to contribute feedback or submit evidence on individual published guidelines. 


You can find the wiki here: www.asco.org/guidelineswiki.

Jennifer Ahlstrom

Friday, August 30, 2013 1:00 AM

Suzierose is one of the most knowledgeable myeloma patients out there. I think the key question she and other patients have is "Where can I find myeloma information that is personally relevant?" How do we sort through all the knowledge and distill it down to something meaningful for us personally? 

A few thoughts on the 5 Es:




  • Education: To have educated patients, you need complex information explained simply. The learning curve for cancer is steep and almost unthinkable at diagnosis unless you are a scientist by nature. The "marketing" of complex myeloma information to patients is not great today. Just tap into the 540 open myeloma clinical trials on clinicaltrials.gov and see what I mean.

  • Empowerment: Patients feel empowered when they can make excellent decisions about their care. Today we rely on amazing and caring doctors who are doing everything they can to provide excellent care, but the lack of available patient data is frustrating for all. As a patient I want to see all patients with MAFB 14:20 myeloma. What is their PFS and OS compared by treatment protocol? Is there a genetic approach that works for this sub-type or do I have an additional genetic mutation that I don't even know about yet? In addition to clinic data, where is the family history data, lifestyle data, and long-term outcome data as patients move from hospital to hospital or insurance changes? Doctors, researchers and patients could make deep and rapid discoveries with access to this data. Also, knowing that I could speed the pace of research by clinical trial participation is empowering. I suddenly have an important job to do - and one that I can do when I feel lousy.

  • Equipped: We all need better tools to simplify, collect and sort and sift - wisdom from a sea of information

  • Enabled: We need to make a mental shift that we as patients have a role to play and that we can enable ourselves, not that others need to give us permission to participate in helping to find a cure.  


As a myeloma patient I hit a tipping point. I realized that no one was going to magically cure me, even though I hoped that they would. My husband and I asked ourselves what we would do if the myeloma returned. We decided that we would visit our doctor and then do our homework - research open clinical trials and find one that was the most personally relevant. In doing that homework, I learned that less than 5% of myeloma patients join clinical trials and that if we ramped up our participation rate to 30% or 50% we could make faster strides in cure discoveries. 

To that end I started a weekly internet radio series called mPatient Myeloma Radio that interviews top myeloma researchers to learn about the latest in their research and learn why patients might want to  participate. www.mpatient.org

It is a start. Most patients haven't thought about how they could directly impact the speed at which we find a cure for myeloma or any other kind of cancer for that matter. The next step is to drive to Suzierose's question of the day, "What is the best, most relevant treatment path for me?"  


Matthew S. Katz, MD

Saturday, August 31, 2013 3:55 PM

Mike, thanks for sharing a great example of how we're all struggling to find the right forums to get accurate health information in a digestible format.  Twitter is great for conversation, but as you mentioned the character limit creates certain restrictions.

It will be interesting to see what the myeloma community thinks of #mmsm on Twitter; hashtags are now usable on Facebook as well but I haven't tinkered with it there.

Keep us up to date on how the experimentation progresses, we all have a lot to learn with this process.   
Michael A. Thompson, MD, PhD

Tuesday, September 03, 2013 4:38 PM

Jennifer & Matt -

Thank you for the great comments. 

After some recent discussion with issues and concerns in the myeloma community, it would be great to get this started soon -- maybe in a few weeks -- date/time still under development. A few thouhts on myeloma clinical trial accrual from a conversation today with some thoughtful myeloma leaders...

At ASH 2012 Dr. Matthias Weiss (@mcccshine) and colleagues in the NCI Myeloma Steering Committee (MYSC) Accrual Working Group (AWG) had a poster "Significant Barriers to Accrual (BtA) to NCI Sponsored Multiple Myeloma – Clinical Trials (MM-CT): A Step towards Improving Accrual to Clinical Trials" (http://ow.ly/hrRSs).

They then went on at ASCO 2013 identify strategies to overcome those barriers.(http://meetinglibrary.asco.org/content/114090-132) One of those strategies included to:
"...educate patients and providers about the significance of a new CT [clinical trial] using social media..."  @MyelomaTeacher (Patient Advocate and Mentor, Patient Services Volunteer, Myeloma Survivor, Retired Educator, and Life-long Learner ) has set up the Multiple Myeloma Social Media (#mmsm) twitter chat on the platform Twubs:

http://twubs.com/Mmsm 

If you are asking what is a Twitter chat? --> http://twubs.com/twitter-chats/about 

We hope to engage you soon... 

- Mike
@mtmdphd 
Michael A. Thompson, MD, PhD

Thursday, September 05, 2013 12:29 PM

For those not on Twitter, here are some links for "Twitter 101" and how to start...
1. Mayo Clinic Center for Social Media (#MCCSM) TW 101 http://network.socialmedia.mayoclinic.org/discussion/tw-101-getting-started-with-twitter
2. How to get started on Twitter: A primer for doctors [Ryan Madanick, MD] – 6/3/12 http://www.kevinmd.com/blog/2012/06/started-twitter-primer-doctors.html
3. Best Doctors SlideShare “Social Media 101: A Physician’s Guide to Getting Started on Twitterhttp://www.slideshare.net/bestdoctors/a-physicians-guide-to-twitter-12776591
4. How Can Social Media Improve Oncology Care?  Thompson MA. Community Oncology. 10(7):212-217. July 2013 http://www.oncologypractice.com//communityoncology/specialty-focus/patient-survivor-care/single-article-page/how-can-social-media-improve-oncology-care.html 

How to get started on Twitter
(Explaining Twitter is like explaining how to ride a bike -- easier to just do it...)

Twitter 101 (Beginning)
1. Signup on Twitter
-- Choose name based on personal (eg @TapKadia) or interest (eg @PalliativeMD) and see what names are already in use by similar minded people
-- Adjust settings (eg Tweet Privacy, Password, mobile, etc) -- include in your profile: interests, what you tweet, potential conflicts of interest
-- Link to more information, such as website or profile

2. Search for and "Follow" a few interesting people or groups

Log on to HootSuite (with established Twitter account -- allows easier following of multiple streams of information)

3. Observe

4. RT (retweet)

5. Tweet or Reply

6. Repeat #3-6 above

Twitter 339 (Advanced)
1. Check followers and remove/block unwanted followers

2. Link to other SM such as blog posts, Facebook (professional account), LinkedIn, Pinterest or organizational websites to cross-leverage different SM platforms

3. Optimization – read “The Tao of Twitter”, watch what others are doing, try different engagement techniques, and attend TweetUps at national meetings (eg, #ASCO13Tweetup)

4. Use analytics to understand tweet impact, what works and what doesn't for your audience

5. Follow  hashtags (eg, #mmsm) and tweetchats (http://tweetchat.com/) or Twubs twitter chats (small "c"):

http://twubs.com/Mmsm 
Cynthia Chmielewski

Wednesday, September 11, 2013 1:01 PM

I am excited to be part of the first MyelomaHangout Twitter chat at hash tag #MMSM on Sunday, September 15 at 9 PM CT.  It will be a wonderful way for patients, caregivers and the medical community to connect and share valuable information. I don't know what the turnout for Sunday's chat will be, but I am hoping our #MMSM chats will grow as more people discover the value of a Twitter Chat.  I was a lurker on Monday night's #BCSM TwitterChat. i was amazed by the level of engagement between empowered epatients and medical professionals. I learned a little bit about the way to organize and moderate a chat, but I am sure #MMSM has much to learn.  I hope we persevere and make #MMSM a much anticipated Sunday night hangout!  You can follow along and participate in our first chat using twubs.com/mmsm.    See you Sunday night! 
Michael A. Thompson, MD, PhD

Wednesday, September 11, 2013 1:51 PM

Cynthia -

I agree that the #bcsm community is highly engaged and finds utility in this activity.
Thank you for your comments and setting up the Twubs #mmsm twitter chat site:

http://twubs.com/Mmsm 

I hadn't heard of Twubs before your input. 
You can check contributors to the #mmsm discussion via their Twitter picture.
I see that Dr. Orlowski (@Myeloma_Doc), Director of Myeloma and Professor of Medicine in the Departments of Lymphoma/Myeloma and Experimental Therapeutics, Division of Cancer Medicine, at The University of Texas M.D. Anderson Cancer Center in Houston, Texas has already signed up. Also, @mpatientmyeloma is a member and many other physicians have said they would check in on Sunday.

We'll see how this experiment works.

Mike
Cynthia Chmielewski

Saturday, September 14, 2013 8:25 PM

Twubs is just away to organize a chat to focus only on the hashtag being discussed. #mmsm.  There are other applications to explore if we don't like Twubs.  The #BCSM chat used Tchat.io and tweetchat.com. Excited about tomorrow night's #MMSM twitter chat kick-off! 
Robert E. Fisher, MD

Sunday, September 15, 2013 5:21 PM

Mike,     I'd like to offer my initiative and online resource developed to empower and educate breast cancer survivors and the health care providers who care for them.  I have been fortunate to be Co-Founder of the Pink Ribbon Survivors Network (www.PinkRibbonSurvivorsNetwork.org).  We created a 501(c)(3) non-profit in 2011 and created three online libraries devoted to education for breast cancer survivorship:          
             "The Curriculum for Recovery Library," which hosts over 200 articles in 18 categories for breast cancer survivors.  We cover a wide range of readings, from "Physical Recovery" to "Leaving a Legacy," and many more categories in between.  
              A Cancer Care Professionals online library melding clinical literature from oncology physicians, oncology nursing, and oncology social work, into a comprehensive and single source online library.  
              A Primary Care Providers online library to provide a summary resource for primary health care providers to understand the many medical and psychosocial issues facing breast cancer survivors as they return to their primary care offices for follow up.    

   Our organization provided an abstract poster presentation at the recent ASCO Breast Cancer Symposium last weekend.  We were able to share our data on usage of our library by breast cancer survivors.      
    Our organization uses Twitter to update individuals on new articles and blogs by our Board.  We feel we have created a unique online educational resource for breast cancer survivors and health care professionals.  Just a minute on our website will illustrate our online libraries breadth and depth of educational offerings.  
      We wanted to empower breast cancer survivors with high quality educational resources provided by cancer care professionals and community advocates.  Mike, I think our website fulfills the four "E's" you mention, in your initiation of this discussion. Rob Fisher, MD practicing medical oncologist @ Rocky Mountain Cancer Centers @ Longmont, Colorado Twitter name: @RMCCdoc
Michael A. Thompson, MD, PhD

Sunday, September 15, 2013 5:42 PM

Rob -

Thank you for the comments and links.
I will definitely check out your site.
Tonight (9-10pm central time) for our first #mmsm twitter chat we going to only tackle two main questions. 
The first is:
What are good online sources of information for myeloma patients?  
If you are available tonight, maybe you could join us and ask for community commentary on your concept for myeloma.

Thanks again,

Mike
@mtmdphd 
Michael A. Thompson, MD, PhD

Sunday, September 15, 2013 11:08 PM

Just completed our first #mmsm Twitter chat.
One hour flew by and we could have obviously gone into more depth on each topic brought up.
Twitter isn't perfect for this, but does allow easy access to focused topics for a specific period of time.
Likely next one is in about 4 weeks.

Analytics here:

http://www.symplur.com/healthcare-hashtags/mmsm/ 
Michael A. Thompson, MD, PhD

Tuesday, May 27, 2014 5:45 PM

Next #mmsm TweetChat 6/29/14 from 8-9pm Central Time with @brendanweiss
Topic: amyloidosis
Michael A. Thompson, MD, PhD

Tuesday, July 15, 2014 1:52 PM

Updates:


...physician conversations about multiple myeloma on Twitter more than quadrupled b/w 2012 & 2013 http://ow.ly/xh3ms #mmsm #ASCO14

 
and the next  Twitter chat...


July #mmsm TweetChat --> 7/27 8-9pm CT w/ @DrOlaLandgren
Topic: Minimal Residual Disease (MRD) in Multiple Myeloma

 
Michael A. Thompson, MD, PhD

Friday, September 12, 2014 1:53 PM

Here are the #mmsm Twitter chat topics we have discussed over the last year:


Date  Topic  People


•09/15/13  Online Info, SMM  -- Rajkumar, Orlowski

•10/20/13  Induction; VRd vs CfRd  -- Kumar

•11/16/13  ECOG-ACRIN Mtg -- Thompson

•01/26/14  Allo SCT in MM -- Hari

•02/23/14  Racial Disparities in MM -- Rajkumar

•03/16/14  Clinical Trials in MM -- Chmielewski

•05/18/14  Can we cure MM? -- Fonseca

•06/29/14  Amyloidosis -- Weiss

•07/27/14  MRD -- Landgren

•08/24/14  MM Risk Assessment -- Usmani

•09/07/14  Crowdfunding for MM Research -- Ahlstrom

 

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