The Next Step: Expanding Cancer Care–Centered Hashtags

The Next Step: Expanding Cancer Care–Centered Hashtags

Matthew S. Katz, MD

@subatomicdoc
Aug 30, 2014

Just a little over year ago, I suggested, on ASCO Connection, that those involved in cancer care should start using a set of disease-based hashtags to help patients, clinicians, and others connect on Twitter. Based upon the success of this initiative to date, as well as an explosion of interest at ASCO’s Annual Meeting, it is clear that we need to broaden the initial set of hashtags to further include and represent the needs and interests of all cancer care professionals.

Disease-based, patient-centric progress

The initial proposal was theoretical based upon the success of #bcsm (breast cancer) and #btsm (brain tumor) communities.  After some listening and tinkering, a refined list was posted on Symplur as the Cancer Tag Ontology.

Now there are:

 ·    regular, active chats for gynecologic cancer (#gyncsm), lung cancer (#lcsm), and multiple myeloma (#mmsm) started in 2013; 

 ·    two new chats in the past two months for adolescents and young adults (#ayacsm) and pancreatic cancer (#pancsm); and

 ·    multiple organizations that use the tag system.

It’s not perfect but seems to be a useful way to bring people together to improve cancer care. These disease-centered tags are a great way for oncologists to contribute and learn, but it’s still ultimately for patients and their interests, not ours. We can educate and participate, but disease-specific tags are patient-centered.

So what do we get for us?

Both before and during ASCO, many people asked me how oncologists could use or add tags. Spontaneously, they made their own:

 ·        #cardioonc for heart health in oncology

·         #pallonc for palliative oncology

·         #hsronc for health services research in oncology

·         #supponc for supportive oncology

While looking at my ASCO meeting program, I realized that these are the kinds of topics we should be able to discuss. We network and learn at meetings, so why not online?

Global opportunities

Already, we’re finding ways to connect. The International Urology Journal Club has successfully connected urologists globally with the hashtag #urojc to discuss current research. They recently published their results demonstrating increasing physician engagement. Along with some collaborators, I’m trying to do the same with #radonc journal club so that radiation oncologists can contribute a unique perspective to improves cancer care. It’s only one way we can open channels of community-building online with a focus on the needs of clinicians and researchers.

Discipline-specific, professional-centered

After some helpful feedback from ASCO experts and sharing with the National Cancer Institute staff for improvements, I have put together the following list:

Clinical Tags

Hashtag

Discipline

Credit

#hemeonc

Hematologic Oncology

 

#medonc

Medical Oncology

@women_in_cancer

#radonc

Radiation Oncology

@jpil

#surgonc

Surgical Oncology

@NirajGusani

#oncopath

Oncologic Pathology

 

#oncorad

Oncologic Radiology

 

#oncorn

Oncology Nursing

 

#onconav

Cancer Navigator

 

 

 

 

#cardioonc

Cardio-oncology

@fischmd and @mtmdphd

#gerionc

Geriatric Oncology

@William_DaleMD

#intonc

Intimacy Oncology

 

#lgbtonc

LGBT Oncology

 

#pallonc

Palliative Care in Oncology

@fischmd

#psyonc

Psycho-Oncology

 

#supponc

Supportive Care in Oncology

@ElizBlanchardMD

 

 

 

#caepid

Cancer Epidemiology

@NCIepi

#caenv

Cancer and the Environment

 

#canutr

Cancer Nutrition

 

#caprev

Cancer Prevention

@NCIprevention

#globonc

Global Oncology

 

#hpeonc

Health Policy & Economics in Oncology

 

#hsronc

Health Services Research in Oncology

@yzafar

 

Scientific Disciplines

#caangio

Cancer Angiogenesis

 

#cactc

Circulating Tumor Cells

 

#cagenome

Cancer Genetics/Genomics

@NCIepi

#caimmun

Cancer Immunology

 

#cametab

Cancer Metabolomics

 

#camets

Cancer Metastasis

@NCIepi

#camicroenv

Cancer Microenvironment

@NCIepi

#camoldx

Cancer Molecular Diagnostics

 

#cananomed

Cancer Nanomedicine

@NCIepi

#caproteo

Cancer Proteomics

 

#castemc

Cancer Stem Cells

 

#caxtx

Experimental Therapeutics

 

#radbiol

Radiation Biology

 

A special thanks to Robert Pines of @NCIadvocacy at the National Cancer Institute, who helped me get additional advice from @theNCI, @NCIepi and @NCICancerStats.

These categories mirror our textbooks, our journals, and our meetings. So what do you think? How do you think defined communication channels can unleash collaboration?

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

Maureen Ward

Sep, 17 2014 8:52 AM

I just returned from funeral of a 42-YO niece (with a loving husband and 2-YO daughter) who died from pancreatic cancer.  She had 2 Masters, a PhD and post-doc in sociology, social work, public policy .  She held critical jobs in post-Katrina Louisiana under 2 governors and thereafter directed research at a nonprofit org that focused on state-wide social service policy, including health care policy. 

She was kind and beloved by all, evidenced by the 1000+ people who attended her visitation and 600+ who attended her funeral.  In short, she was a very worthy person, worth as much prolonged life as possible.

As a lay person, albeit with research experience during my husband's lymphoma, I spent 40-60 hrs weekly since last November researching cell biology; pubmed articles re in vitro, in vivo, mouse & human studies; trial options via clinicaltrials.gov; and speaking with lots of specialists. 

I wasn't expecting a home-run, was just trying to string together several good singles - if only a dribble or two, for as long as possible.

I came away horrified that apparently NO ONE accessible to patients can provide a comprehensive analysis of near-term potential treatments; clinical trials by diseased organ+other relevant diseased organs and targeted & immuno and othery treatments; off-label treatments; and/or compassionate use ideas. 

Everyone seems lodged within an institutionalized silo of research/treatment and not incentivized or even able to address very relevant options outside the silo.  And it takes some months for patients to discover this fact, despite repeated requests for a comprehensive overview.

Even more upsetting, physicians & researchers within a major cancer center may not even know of very relevant trials underway at their own institution in a different department (e.g., targeted therapies vs immunotherapies). 

Still more horrifying, very relevant trials supposedly 'recruiting' for pancan (per clinicaltrials.gov AND the institution's own website) were not actually studying pancan when I called for trial availability. 

And of course, finding an open slot is an Herculean task, even if the patient threads the needle of extensive exclusions.  (Asking a pancreatic cancer patient to stay off other treatments for 4 weeks, while understandable, is asking too much in most cases.) 

This situation is excruciating for families trying, in a rigorous, systematic way, to help a loved one negotiate a fast-moving cancer like pancreatic cancer.

I think the hastag idea is helpful, but though I use virtually all social media but twitter, I never stumbled on it during 11 months of concentrated researching.  It needs to be publicized to patients, not just doctors.

And any hashtag list should include, individually, each specific genetic alteration implicated in cancer.  (If the government can sponsor a world-wide KRAS task force, there should be a hashtag for it.)

Focusing on cancer organ-by-organ is outmoded and insufficient.  (I tracked melanoma, non-small cell lung cancer and several other CAs in addition to pancan because my research indicated their possible relevance for treatment ideas).

We need detailed, timely, comprehensive information about specific mutations and their pathways, as well as other approaches (e.g., immunotherapy - which helpfully is on your list) in order to cut through the fog to assemble relevant, timely and actionable information.  PLEASE. 

This need goes far beyond hastags.  We would have paid dearly for a couple of hours with a physician or other expert who could survey the whole scene and provide unbiased, up-to-date analysis of the kind I was trying to cobble together via spreadsheet. 

Or at a minimum a comprehensive, up-to-date database that could be searched for, e.g., every scrap of info relevant to KRAS and TP53 alterations, as well as pancreatic and other relevant cancers, from concept, through lab, to trials, to preliminary results. 

Enough with the Balkanization and databases that aren't up to date.  We don't have time for it.  Uniquely valuable lives depend on it.

Matthew S. Katz, MD

Sep, 18 2014 9:41 PM

Dear Maureen:
I'm so sorry for your loss. Your niece sounds like a highly accomplished person and clearly loved. Pancreatic cancer is aggressive and takes many of our loved ones early. She is lucky to have had an advocate and supporter like you helping do research and find resources to try to help her.

You are right; what we have now is inadequate. There are a variety of reasons. As you correctly have learned, knowing the organ of origin isn't enough. We are in the midst of an exciting but confusing time with molcular medicine becoming increasingly sophisticated. However, we're still not able to tell which molecular markers matter. You cite mainly genetic changes, but there are all kinds we need to consider. 

When I first started looking at the idea of hashtags, I thought about what you propose. However, right now there are not enough currently using hashtags even for the common organ-based to make the genetic/molecular library usable - yet. With time maybe the organ-based structure will be outdated, but it is still very relevant for advocates to connect, organize and insist upon change. With overly granular tags, you risk never getting a big enough community to effect change.

One way to address Kras is to use it as a tag set -- for example, if discussing lung cancer use #lcsm #kras together. That way, the larger lung cancer community knows about it and can attract others. If you focus on #HER2, it matters in breast cancer but not clearly as much for other cancers - a purely molcular-based system (genetic or otherwise) may give less signal, more noise when it comes to symptom management because Kras lung cancer will be different than Kras rectal cancer.

You are right about the issue of information silos. But there is no easy solution. Different researchers may have different funding sources that don't play well together, so to speak. It's not impossible but it requires a commitment to collaboration. In an era of less research funding, that kind of collaboration may become easier or harder, I'm not sure. We'll see.

I do think that there are ways to aggregate some information better, and we should. I think doctors ideally can help, but we're human and no one, not even the experts, will know everything. But we can make pooled resources that doctors can access easily, so that they can then help more patients deal with barriers and difficult, important questions.

Thank you again sharing your thoughts. Mine are with you and your family.
Best, Matt 

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