Social Media for Clinical Research Data?

Keeping abreast of the rapid developments with social media is not easy, particularly in the highly regulated biopharmaceutical environment. Every week, something new happens that prompts debate and outpourings from various sources. So you can imagine my surprise when considering that social networks were really for marketing purposes, I came across a blog in the Wall Street Journal about using Facebook for collecting clinical trial data.

The article, entitled “ALS Study Shows Social Media’s Value as Research Tool” discusses how the gold standard methodology for conducting clinical research through ‘randomized, double-blinded, placebo-controlled trials’ has become so expensive and time consuming that new methodologies have to be sought to ensure that research continues to move forward. Perhaps what surprised me the most was that those who are advocating such new methodologies are eminent scientists who have been in some influential positions.

We have been hearing more and more about the patient’s voice in clinical research in the last few years and that voice is getting louder. The DIA Annual in Chicago is in fact bringing together patients who have been involved in research to sit with the regulators, physicians and industry to talk about their experiences. Of interest to me, is that social media opens up a whole new way of collecting valuable data from patients. Facebook has become part of a generation who interact socially with people online and also let others know how they are feeling or indeed their location. Patient diaries do something similar, fill in your patient diary at a certain time of day, saying how you feel. Interestingly, when I first came into the industry, I remember having a conversation with an eDiary vendor about how you made a patient compliant? As humans we are not compliant (thank goodness or life would be pretty boring!) and although we often start things with good intentions, we may not necessarily keep going (all failed dieters out there stand up!). In order to gain patient compliance, we need to ensure that recording that important trial data is as easy as possible and as people use Facebook (or any other social medial site) to record this without really thinking about it, is this a methodology that could be encouraged?

It is tricky, patient advocacy groups could quickly gather biased and poor research data and cause unnecessary concern, data security could be interesting (or lack thereof), scientific rigour needs to be considered and so on. However, if it means that a therapy that might have been rejected but could potentially improve outcome as in the ALS study, it has to be considered and of course, the turnaround was fast.

It seems that the discussion is growing in this area. This morning I came across another blog that quoted Sir Tim Berners-Lee from his article in the Scientific American, Long Live the Web: A Call for Continued Open Standards and Neutrality (which ties in with Dave’s last blog about standards development) and worth a read in its own right but opens the discussion again around the use of social media for scientific research. It poses the other side of the argument if you like, about why we can’t use social media to collect data (some of which I have mentioned above). This particular blog focuses on the communication aspects of science and proposes that if scientists are able to openly communicate then social media is enhancing the science. My personal opinion is that as a new digital native generation come through, who have a better feel for the technologies, both its limits and innovative use, those of us brought up in the dark ages before the world wide web will be surprised at just how exciting this research methodology could be.

Finally the last blog I read this week was about the life of a ‘Tweet’. It demonstrates perfectly the issues with Twitter and how 140 characters  often lacks the contextual information needed to ensure we don’t get ourselves into hot water. If you read through the discussion, you will see that ‘clinical tweets’ i.e. those asking about patient treatment or suggesting treatment are certainly considered controversial. From my perspective, there is a great deal to learn about how we use Twitter in both a B2B context and a B2C context. If patients start posting adverse event reports on Twitter, who should respond to them? Where does the responsibility lie in order to ensure that there is a response? What if it’s not genuine? Ironically, the supposed UK ‘super injunctions’ that seem me to be so ineffective in a new social media environment, suggest that Twitter has to be treated carefully; if you respond too harshly to criticism or not at all, you can find yourself on the end of the vocal masses.

So as is usually the case, there are more questions than answers with this topic, but no matter what you do in clinical research, you cannot afford to stick your head in the sand and ignore this fascinating and rapidly expanding area.

4 comments on “Social Media for Clinical Research Data?

  1. Very interesting topic that certainly demands more attention that it has received. At least one major pharmaceutical company was forced to remove a Facebook page devoted to a condition targeted by one it’s products for the reasons you stated. One question, in particular, raises another concern. You voiced concern that an adverse event alluded to on a social media site may not be genuine. I wonder what would prevent unethical individuals working for a competing drug company from posting fake events. How would we know? We are living in interesting times if not a little frightening.

    1. Hi Mike,

      It is indeed a little scary! I think there needs to be that balance of what’s actually achieveable within a regulated environment and the demands of the patient and the patient advocacy groups. Also I wonder about how far companies monitor the “buzz” around their products on social media in relation to adverse events.

      There was quite a bit of discussion on the SCDM group page on Linked-in about this, generally the feeling was that data could not be collected as the FDA would not allow it (confidentiality, bias etc) and that is certainly the case with the current regulations. My personal opinion is that it’s in the interest of the patient for those of us working in the space to monitor closely keep abreast of the changes and influence future developments.

      AJ

      1. Hi AJ,

        I agree. Sites such as ‘Patients Like Me’ have been credited with expediting drug development; if anything, it simplifies recruitment. Last year the Chicago chapter of the American Statistical Association sponsored a seminar on analyzing data from social media. Google demonstrated a set of analytical tools to facilitate this process. The president of one local company presented data illustrating public sentiment for an allergy drug based on Facebook posts and Tweets. The cyberspace gold rush is in full force. And that is the problem. How do we channel this vast amount of information into our highly regulated environment in a way that would allow us to take full advantage of the richness of available data without compromising the integrity of our industry and privacy of our subjects?

        Mike

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