A Very Worthy Program: Cancer.Net's patientACCESS

A Very Worthy Program: Cancer.Net's patientACCESS

Don S. Dizon, MD, FACP, FASCO

@drdonsdizon
Dec 26, 2013

As has been my tendency as of late, I will often open up my social media sites to see what is happening in the world around me. One of these sites I have come to rely on is LinkedIn, which sends me the news from all sorts of places, and from my colleagues within and outside of oncology. One of those I consider both a colleague and a friend, and follow closely is Mike Thompson, a co-columnist here at ASCO Connection, and yesterday, his news did not disappoint. It was to highlight the news from Cancer.Net that patientACCESS was live. This program, an initiative between ASCO, AACR, Elsevier, SAGE, Wiley, Wolters Kluwer Health, and the Copyright Clearance Center, provides free access to articles published in the Journal of Clinical Oncology (JCO) and the Journal of Oncology Practice (JOP) to patients being treated for cancer and to their caregivers.

This was huge. I thought of all of the connections I had made via ASCO Connection and Twitter, many of whom were patients, caregivers, or advocates, and all of whom bemoaned a lack of access to “our” scientific publications. These folks are a part of an ever-enlarging movement of e-patients, who strive to learn more about their health and conditions and to manage them, as partners in the doctor-patient relationship, not recipients.

I quickly went to twitter to make sure the news of this achievement had been shared widely:

Within minutes, it was re-tweeted, mentioned, and picked up by others in the twittersphere.

As expected, the news was widely shared, and it was met with much enthusiasm. For those who are not aware of, or otherwise engaged in social media, I thought I would asks Lisa Fields to explain the importance of patientACCESS. I met Lisa through Twitter, where along with Colin Hung, she co-moderates a weekly TweetChat on healthcare leadership (#HCLDR). Here is what she said:

It’s an honor to have this opportunity to share my excitement and thoughts when I learned the Journal of Clinical Oncology had made the decision to provide free access to patients and their caregivers. I am a patient advocate, a physician advocate, a science advocate, a Twitter Advocate, and an Open Access Advocate. My goal has been to utilize Twitter as a bridge for all of us to work together.

When patients are first diagnosed with cancer, many develop an intense craving, a type of hunger to learn all they can about their illness. This is their body and they want to know all they can. The web is full of information that’s both accurate and reliable. However, there is also information on the web that is not accurate, nor evidence based, and sometimes this can lead to creating false hope for patients.

For those who attempt to delve into the scientific journals and publications, there are many challenges. As my friend Jack Andraka has so often shared, having to pay for access gets expensive, and when put in the context of the costs of care, it is no wonder that it is not feasible for a lot of people; indeed, many patients will be at risk for bankruptcy when faced with a serious illness. Providing valuable information without the worry of cost ensures more patients will be able participate and share in knowledge as it is reported and published.

I believe this news officially acknowledges that there are patients and caregivers who want to learn as much as they can, and that patients have provided very important contributions that make medical research possible. Indeed, it is a statement that patients have been partners in clinical medicine, and have been for a long time. 

I’ve seen patients and physicians working together in a transparent and seamless way through Twitter chats. One only needs to participate in a Breast Cancer Social Media (#bcsm) tweet chat to see how patients and physicians are already communicating and working together, discussing science, and broadening the understanding of breast cancer and its evolving treatment paradigms. Indeed, tweet chats have become efficient vehicles that allow us to share information both domestically and internationally.

I don’t think it’s intuitive for most to understand the significance of having trusted scientific literature available for patients and their caregivers. While it’s not something I’m proud of I didn’t see the value in the beginning. I was wrong. Focused Tweets shared among concentric circles of patients, physicians, medical education professionals, and researches quickly gives us an amazing view of the depth of knowledge of our patient peers. This becomes even more evident as we are beginning to see more evidence based tweets and the emergence of a virtual learning community.

Roni Zeiger, MD, Former Google Chief Health Strategist and now CEO of Smart, shared this quote, taken from a video created by Dr. Larry Chu in 2012:  “By far the biggest untapped resources in healthcare is the patient.”

As I saw retweet (RT), mentioned tweet (MT), and  hat tips (HT) circulate from my twitter colleagues (affectionately called Tweeps), I was never prouder of ASCO and its leadership. Certainly, it was a welcome present for the holiday season, for me and for many others.

Happy Holidays all.

**Heartfelt thanks to Dr. Mike Thompson for sending me the news re: patientACCESS.

Learn more about Don S. Dizon on Google+

Disclaimer: 

The ideas and opinions expressed on the ASCO Connection Blogs do not necessarily reflect those of ASCO. None of the information posted on ASCOconnection.org is intended as medical, legal, or business advice, or advice about reimbursement for health care services. The mention of any product, service, company, therapy or physician practice on ASCOconnection.org does not constitute an endorsement of any kind by ASCO. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of the material contained in, posted on, or linked to this site, or any errors or omissions.

Comments

Robert S. Miller, MD, FACP, FASCO

Dec, 26 2013 2:06 PM

Don, 
Thanks for highlighting this valuable program and to the others for sharing their comments. I also wanted to point out that the "patientACCESS" program is sponsored through the generous support of ASCO's Conquer Cancer Foundation. They also help underwrite Cancer.net and some of ASCO's other patient advocacy programs, include scholarships for patient advocates to attend the ASCO Annual Meeting and other ASCO Symposia. And donations made to the Conquer Cancer Foundation between now and 12/31/13 will be matched dollar for dollar through the generous support of a donor. More information about becoming a donor to the Conquer Cancer Foundation can be found here.

Robert S. Miller, MD
Editor-in-Chief, Cancer.Net 

Don S. Dizon, MD, FACP

Dec, 26 2013 2:41 PM

Bob: Great information as always, and one that should be easy to support. Thanks for your leadership at Cancer.Net, and for your friendship. Here's to a new year approaching! D

Michael A. Thompson, MD, PhD

Dec, 26 2013 4:05 PM

Don - 

Great post.  
There are many high quality ASCO, Cancet.Net, and CCF resources that are not well known. 
Social media is one venue to share and  "amplify the signal".
I'm glad to have met you, Bob and many others through social media. 
 
Happy Holidays, 

Mike 

Don S. Dizon, MD, FACP

Dec, 26 2013 7:12 PM

Mike: As a member of the "mutual admiration society" (lol) feeling is 100% reciprocated. One of the benefits of social media was the collegiality discovered, nationally and internationally, within and outside of my area of specialty within oncology and medicine in general. Looking forward to more collaborations- both online and in person! D

Deanna J. Attai, MD

Dec, 31 2013 1:00 PM

Information being made available to anyone who needs it - wonderful and empowering. And also necessary is a way to let those who need the information know that it is awailable. That's where the power of social media comes into play. I'm very proud to play a small part, and also look forward to more professional and personal connections and collaboration!

Don S. Dizon, MD, FACP

Dec, 31 2013 1:54 PM

Deanna: Thank you for your mentorship and leadership in the arena of social media. I have learned so much from you and your work specifically with #bcsm. I am also privileged to collaborate with you, and also look forward to many more opportunities. Totally agree with you re: patientACCESS. Let's spread the word. DSD

Robert E. Fisher, MD

Jan, 05 2014 8:54 AM

As to providing high quality, professionally vetted information for our patient population, I've had the priviledge to work with a non-profit organization founded by cancer professionals that provides an internet based library for breast cancer survivors and the health care providers who care for them: (www.PinkRibbonSurvivorsNetwork.org).    This website contains hundreds of articles and topics for the education of breast cancer survivors in their journey through treatment and recovery.  Many of the articles are from the Oncology literature, including the perspective of Oncology Nursing and Oncology Social Work.  We have found that our patient population is highly interested in this professionally directed reading.  At last count, the website's library has been accessed in 90 countries, which is gratifying to know that we've reached so many online readers in third world countries.  We've also used our Twitter connection to notify our followers of new articles, so as to utilize social media.        To affirm comments in this discussion, yes I think that our patient population is eager for high quality medical information, and as I illustrate here, we as professionals can be involved to assure that worthy content is being delivered.
      This website has incorporated the Cancer.Net patientACCESS Program on several of it's links for breast cancer survivors.  We are hopeful that these links will inform interested patients to utilize this exceptional opportunity for patient-physician dialogue.  
     [ The breast cancer survivors educational resource is entitled The Curriculum for Recovery Libary, and is found on the website's Survivor homepage. ]  
      Find this organization on Twitter:@PinkRibbonSN 

Don S. Dizon, MD, FACP

Jan, 09 2014 10:11 AM

Dear Robert: Kudos to you for your efforts and your work with the Pink Ribbon Survivors Network. Access is an important thing, as I am learning in clinic and on social media. I would venture to say that not only "can" professionals get involved, I am evolving to believe that we as professionals "should" get involved. Anyone can post anything on the internet and call it "truth"; we must ensure that information on the net is valid, evidence-based (whenever possible), and balanced. It also will help if we give our opinion on the literature; patients are living in a real world of evidence, preferences, values, and their own goals. We as clinicians can help by providing opinion on the literature so they in turn can incorporate that knowledge into their own lives. 

Happy New Year, and thank you so much for posting!  

DSD 

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