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.