Biotech Strategy Blog

Commentary on Science, Innovation & New Products with a focus on Oncology, Hematology & Cancer Immunotherapy

Posts from the ‘Social Media’ category

I will be writing in the next few days about some of the Pharma and Biotech winners and losers at the 2013 annual meeting of the American Association for Cancer Research (AACR) that just finished in Washington D.C.

However, what was noticeable to me was the disappointing lack of Twitter conversation from the 18,000 cancer scientists at the meeting.

Part of this may reflect the culture of AACR, where it is forbidden to take photographs, record or transmit information. “Thou shalt not tweet” may be thought of as a logical extension of this.  It’s certainly not easy to distil complex science into 140 characters.

However, some people did tweet from the meeting and a quick look at the Symplur analytics for the #AACR meeting hashtag, shows the following:

  1. Highest number of tweets came from Dr Naoto Ueno (@teamoncology), a breast cancer medical oncologist from MD Anderson Cancer Center in Houston, who was not even at the meeting, but clearly would have liked to have been.
  2. The second highest number of tweets came from Dr Philippe Aftimos (@aftimosp), a hematologist/oncologist from Institut Jules Bordet in Brussels.  Philippe wins my award for the most outstanding social media contribution from AACR 2013.  He shared insights throughout the meeting in English; I could not do that in a foreign language.  Outstanding!
  3. Also on the AACR twitter leader board was patient advocate/cancer survivor AnneMarie Ciccarella (@chemobrainfog) who presented a poster at the meeting on the power of social media for breast cancer advocacy (#BCSM). Blog readers may recall AnneMarie and other patient advocates did a phenomenal job of live tweeting #SABCS last year.

There were many others too numerous to mention who live-tweeted from AACR this year, and my post is not intended to showcase some people over others, but offer my impression that cancer scientists have not embraced social media in the way that cancer doctors and patient advocates have at clinical meetings such as ASH and ASCO.

There was no public display of Tweets or a conference Twitter Board, as there is now at leading medical meetings organized by ECCO, ESMO, AUA or ASH where delegates can watch meeting tweets in real time in the common areas.  A heavily tweeted session will attract new attendees while it is ongoing.

At these meetings, I have often seen people go to sessions based on how interesting the tweets are.  I follow the “law of two feet” that says if the tweets are more interesting in another session, time to get up and move there.  It’s funny to watch others do the same thing and converge on a room at the same time.

While watching the Twitter board at ECCO or ESMO, I have been asked how to sign up for Twitter in order to follow the conversation (and hopefully be part of it). There was no twitter board at AACR to encourage such behaviour.

Those attending the ASCO annual meeting, will know the unofficial Tweet-up attracts a large party.  The AACR unofficial tweetup had just 5, and did not as far as I am aware even merit a RT from @AACR!

To highlight the enormous gap between cancer researchers and cancer physicians when it comes to social media, one only has to look at the annual meetings of the American Society of Clinical Oncology (ASCO) and American Urological Association (AUA).

In recent years both ASCO and AUA have offered a workshop on how oncologists or surgeons can use social media in their practice.  It is increasingly important as a tool for sharing and communicating information.  There was no workshop at AACR on how cancer researchers could use social media to collaborate or share their research.

Why is this important you may ask?  The reason that I am taking the time to write this is that if cancer researchers want the public to support the funding of research, then they need to communicate the value of what they do.

Last year, leading cancer researchers, including a past president of AACR and several Professors of Medicine, tried to obtain 25,000 signatures for a White House Petition in support of maintaining the budget for the National Institutes of Health (NIH) given the important role it plays in funding cancer research.  AACR decided not to support this initiative and the petition sadly fell short by a few hundred signatures of the number needed to force an official response.

This year during their annual meeting, AACR organized a Rally for Medical Research (#RallyMedRes) to protest against the forced NIH funding cuts that were implemented as a result of the failure of the United States Congress to agree a budget deficit program.

An expensively organized rally with a stage that resembled a rock concert preached to the converted on the need to spread the word on the value of medical research. Whether it will have any effect in reversing NIH cuts remains to be seen.  I fear it was too little too late and an attempt to metaphorically close the stable door after the horse has already bolted.

If cancer researchers want the public to fund their research, in my view one of the things they need to do is communicate the value of the scientific research they conduct.  One way to do this is to embrace social media more, particularly at meetings such as AACR, where there is the opportunity to share information with a worldwide audience.

Next year at AACR, I hope we will see a Twitter board at the entrance to the meeting and more cancer researchers encouraged to participate in the conversation and share their thoughts and experiences.  AACR could learn a lot from medical oncologists and patient advocates on how to embrace the true power of social media.

 

4 Comments

ASCO 2011 #BlisterWalkIt’s almost time to pack the comfortable shoes for the #blisterwalk (thank you @MaverickNY for that pithy description) across the bridge at ASCO 2012 in Chicago.

No matter what your ASCO program choices, attendees are destined like a modern day Sisyphus to walk the bridge repeatedly as your schedule takes you from one end of McCormick Place to the other.

I am looking forward to the new data expected at the meeting. For diehards who are at ASCO till the last day, next Tuesday will see Dr Chris Parker present updated data on the ALSYMPCA trial for radium-223 (Alpharadin) in advanced prostate cancer. We can expect to see an increase in overall survival (OS) from the 2.8 months presented in Stockholm last year. HT @BiotechStockRsr.

An increase in OS is not uncommon with time, the COU-AA-301 trial results for abiraterone acetate (Zytiga) increased from 3.9 months when initially presented, to 4.6 months at ASCO 2011 last year.

And for those for whom the official ASCO 2012 program is not enough, there’s a series of ancillary events most evenings ranging from an unofficial tweet up to investor presentations, faculty parties and CME events.

The unofficial tweetup hosted by @adamfeurstein and others will be at the Hubbard Inn this Friday from 6pm to 8pm. Last year it featured an eclectic mix of MDs, analysts, investors, Pharma/Biotech peeps, cancer advocates, science bloggers, journalists and PR mavens.  Welcome to the world of twitter – @3NT will see you there!

1 Comment

The patient advocacy session on “Cancer and the Internet” at the 2011 European Multidisciplinary cancer congress (#EMCC2011) in Stockholm was well attended by patient advocates from across Europe, as well as industry and communications professionals.

The session focused on building online communities, how the internet can help patients with rare diseases have a voice with policy makers and showcased the new European cancer portal: ecancerHub.

Chaired by CML advocate, Jan Geissler (@jangeissler) the session heard from ACOR founder Gilles Frydman (@gfry), Denis Costello from Eurodis (@rarecare) and Richard Sullivan from Kings College London.

Earlier this year, the PEW Internet & American Life Project reported that 80% of internet users have looked for online health information around a disease or major health topic. The internet continues to grow in its importance to patients and how the pharmaceutical/biotechnology industry reaches them.

One of the challenges expressed in questions from the audience was the plethora of information available on the internet to patients, and how the number of available sites continues to grow, leading to overwhelm.  Knowledge, as Gilles Frydman wryly observed, is always in beta.

ecancerHub is a new online global cancer community and knowledge portal

Superportals such as the ecancerHub are likely to play an increasing role in how patients share information and research the internet, especially if they can curate reliable, accurate and independent sources of information.

Funded by the European Commission’s eurocancercoms project, ecancerHub aims to become a leading knowledge base for cancer information and also where online communities of patients can easily meet to share experiences and learn from each other.

Other than a quick visit, I have not yet had the chance to check the site out fully, but it looks promising. I was particularly interested by the future developments that were discussed, such as focused search engines that will help people find clinical trial or cancer information.

Ultimately, ecancerHub will only succeed if it gains a critical mass of users and to do this, not only must it become widely known, but it also has to offer superior content, ease of use and an online experience that promotes patients to preferentially build enduring and valuable communities on it as a one stop hub, rather than elsewhere.

If you are a cancer patient or have an interest in healthcare social media, ecancerHub is worth a visit.

Everyone at BIO 2011, the annual international convention of the Biotechnology Industry Organization (BIO) is into networking.  Sit next to someone on one of the shuttle buses, in a coffee line or in a meeting hall and a conversation will soon be struck up and business cards exchanged.  Business development, partnering and making connections is what this meeting is really about.

BIO 2011 Networking Delaware BoatWith this in mind, there’s a series of receptions, parties and events that take place around BIO. Yesterday late afternoon, I attended a reception on the Kalmar Nyckel, AKA the Delaware Boat. It is a replica of the tall ship that sailed from Sweden to the New World in 1638, and landed 24 settlers in the Delaware Valley, in what is today Wilmington, DE. Today’s replica serves as Delaware’s goodwill ambassador.  Hosting a reception on a boat made a change from the standard hotel ballroom.

BIO 2011 Reception NewseumIn the evening the official BIO reception took place at the Newseum.  Plenty of food, drinks and music, plus the opportunity to mix, mingle and explore the Newseum. I enjoyed it! You could even try your hand at being a newscaster at one of the interactive exhibits.

This evening I will be at the New Zealand and Italian Embassies for receptions. BIO 2011 – network till you drop!

BIO 2011 Tweetup Old Dominion BrewhouseThe most enjoyable part of Day 1 of BIO 2011 for me was the unofficial tweetup at the Old Dominion Brewhouse.  Who are the people I have been interacting with on Twitter? Some have twitter handles close to their name, others like me are more cryptic. So at a tweetup it’s common to introduce yourself through the language of twitter, “I’m @3NT.”

Meeting up with someone you have had twitter conversations is like meeting up with a penpal (for those who can remember the days when we still wrote letters and didn’t have email, twitter or facebook). In many ways you already know each other and have common interests, so the conversation is easy.  Putting a name to a face is fun.

At the BIO 2011 tweetup yesterday, it was great to meet up with @IAmBiotech, @LacertaBio, @ldtimmerman, @FierceBiotech, @JKureczka, @corytromblee, @christianetrue, @InVivoBlogChris, @lisamjarvis, @jacquimiller (apologies to anyone I missed who was at the tweetup but I didn’t manage to meet).

I look forward to following on Twitter what’s happening at BIO 2011 today, especially as there are several parallel sessions that I will not be able to attend.

The findings from a telephone survey of 3001 adults show that social media and the internet are increasingly important for finding health information.

This has important implications for the marketing professionals in the biotechnology and pharmaceutical industries who struggle to come to grips with social media in the absence of any FDA guidance.

The Pew Internet & American Life Project published today their survey on “The Social Life of Health Information, 2011.”  It makes for interesting reading.  Some of the statistics I found of interest, relating to the United States, include:

  • 74% of adults use the internet
  • 59% of adults (80% of internet users) have looked for online health information around a disease or major health topic
  • 25% of adults (34% of internet users) have read someone else’s commentary or experience about a health issue on an online news group, website or blog
  • 19% of adults (25% of internet users) have watched an online video about health or medical topics (See my previous post on using social media such as video to recruit for clinical trials)
  • 13% of adults (18% of internet users) have consulted online reviews of particular drugs or medical treatments

As this insightful report notes, “people use online social tools to gather information, share stories, and discuss concerns.”

Pharmaceutical and biotechnology companies will have to come to terms with addressing the increasing desire of patients for information, presented in a way that is fair balanced and non-promotional.

The power of social media to potentially change the paradigm of how medical data is gathered was also highlighted in the recent paper published in Nature Biotechnology.

This paper presented an analysis of data collected on the website PatientsLikeMe for those suffering from amyotrophic lateral sclerosis (ALS).  While such data will never replace a randomized, blinded drug study, I think that patient community data could have a role to play in areas around Quality of Life (QoL) assessments and post-marketing surveillance.

Increased fast internet access is driving social media and the demand for quality health information.  This trend is only set to continue.

ResearchBlogging.orgWicks, P., Vaughan, T., Massagli, M., & Heywood, J. (2011). Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm Nature Biotechnology, 29 (5), 411-414 DOI: 10.1038/nbt.1837

Twitter is a fascinating source of news and current affairs that allows you to share in events from a distance.  I was, therefore, fascinated to see Tweets from a recent healthcare meeting in which CNN discussed how they are having to compete with bloggers.

CNN claimed that this was due to bloggers violating embargoes on the publication of scientific data.  As a science blogger, I questioned whether this naked assertion was correct?

Using Storify, I captured the Tweets and looked into more detail as to “Who cheats and breaks science new reporting embargoes?”

You can read this on Storify, or in the embedded post below.

As readers may know, I recently attended the annual meeting of the Association of Health Care Journalists (AHCJ) in Philadelphia. I’m working my way through some posts from Health Journalism 2011 , and at the same taking the opportunity to experiment with new social media tools such as Storify.

So far I have written posts from AHCJ on Massachusetts health care reform and the drug development pipeline.  Tomorrow, I will be posting on nanotechnology and a presentation by Kacy Cullen, Ph.D from the Center for Brain Injury and Repair at the University of Pennsylvania – my highlight of the meeting!

On the last day of Health Journalism 2011 there was an engaging panel on social media and blogging moderated by Scott Hensley of National Public Radio (NPR).

I’m always looking for tips on what I could be doing better, so it was interesting to hear from experienced journalists on their approach to blogging and social media. I decided to use Storify to aggregate many of the live tweets, and in the process shares the tips from the session.

Storify is an interesting new tool in beta stage of development that allows you to capture social media and incorporate into a story and then embed it in a blog post.  Given that Twitter posts are not kept after several days, it’s a useful way to capture Tweets that may otherwise be lost. It also allows you to bring social media together from a number of sources e.g. Facebook, YouTube.

However, there’s room for improvement given the lack of a search feature on the Storify site and to me it seems hard to find stories that others have done, unless you have a link to them. Improved search will be key to success.

I’m also not sure to what extent any content posted on Storify makes it into search engines, or is crawled by bots.  Again, if your content cannot be found, then it’s social media utility is lowered.  However, it’s always good to try new tools and you can read what I put together on Storify from the Health Journalism 2011 session on blogging and social media below:


 

I recently attended the Association of Health Care Journalists (AHCJ) annual meeting in Philadelphia. “Health Journalism 2011” offered the opportunity to hear speakers on a wide range of topics.

One presentation that by chance I attended was on what we can learn from Massachusetts, where a law was passed two years ago requiring individual healthcare insurance. Many of the features of the MA law were incorporated into the Affordable Care Act that will impact everyone in the United States.

I have used Storify to aggregate some of the live Tweets from the session, and I hope this captures the essence of what the panel presented.

1 Comment

Richard Schilsky in Science Translational Medicine describes the challenges of enrolling patients into ever more complex cancer clinical trials. It is estimated that only 3-5% of cancer patients participate in clinical trials. Can social media be used to overcome barriers to enrollment?

There are many barriers to enrollment such as a lack of incentive by the physician if they can prescribe the drug off-label and obtain reimbursement, the additional legal liability, time required for research documentation and the need to follow human protection requirements such as informed consent and obtain Institutional Review Board (IRB) approval.

There’s also the issue of equipoise, the uncertainty as to whether a new treatment will be beneficial or not and the need to discuss with a patient their willingness to accept the risk that a new treatment may offer less benefit than the current standard of care. This topic is beyond the scope of this post.

Schilsky notes in his commentary that:

“trial start-up times have lengthened to an average of 2 years or longer, up to 40% of cooperative group phase III trials have failed to complete accrual and closed without achieving study endpoints, wasting the contribution of those patients willing to enroll in the trial.”

Time to market is key to the success of biotechnology and pharmaceutical industry, with product life governed by patent years. Delays in time to market have a real ROI impact, and may lead to promising products being discontinued prematurely.

One of the barriers to enrollment noted in Schilsky’s highlights is “insufficient patient awareness/demand.” Can social media play a role in overcoming this?

To look at what is happening currently, I used Storify, a new tool that allows you to create stories using social media:

http://storify.com/3nt/using-social-media-to-recruit-for-cancer-clinical-

Reference

ResearchBlogging.orgSchilsky, R. (2011). Accrual to Cancer Clinical Trials in the Era of Molecular Medicine Science Translational Medicine, 3 (75), 75-75 DOI: 10.1126/scitranslmed.3001712

error: Content is protected !!