Biotech Strategy Blog

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

Posts tagged ‘Biotech Social Media’

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.

Although I had to leave BIO 2011 early due to illness, I did shoot some video during the time I was at the meeting, and have now put this together into a short 2 minute video that you can watch below.

This post wraps up my coverage of the 2011 BIO international convention in Washington DC. Next week, I’ll be writing more about innovative science and new products in the pipeline that have caught my attention.

A happy holiday weekend to everyone in North America.

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).

If you want to plug into biotech social media and hear what the conversation is at BIO 2011, then the Icarus Consultants website is aggregating the hastag #BIO2011 tweets.

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

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:


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