Pharma’s Facebook

Explored the www.Inspire.com website you mentioned and was rather dismayed about how deeply they disguise the fact that they sell your profile information to Pharma. For example, can you show me anywhere in their membership guide that they say that they do this? http://www.inspire.com/static/inspire/help/inspire-guide.pdf

There is disclosure under the help section but it all feels rather sleazy to me and give Pharma a bad name. Not to mention there may be serious HIPAA problems.

As someone in the industry who believes in transparency, I don't think sites like this are a step forward. We need to make clinical trial information available openly, not through subterfuge.

When 80% of clinical trials do not recruit on time, that is a red flag that pharmaceutical companies must adapt a new strategy to recruit patients into trials. I happen to work for a leading clinical trial recruitment and retention firm, Healthcare Communications Group, so I have seen first-hand how a comprehensive enrollment and retention program can effectively secure patients into clinical studies. Sadly, what I have witnessed is that drug companies place the bulk of their efforts designing articulate clinical trials, but then forgoing any recruitment investment or intervening when the problem is already at hand. The statistic on 80% of studies experiencing delays, as quoted from the Newsweek article, is stunning. With the economy as bad as it is, and with increasing numbers of pharma mergers and downsizing, I can only hope that the industry will reach out to experts in the field to assist in developing recruitment and retention strategies in parallel to their study planning activities. The incorporation of social media to reach patients where they live and play, proactive educational tools to mitigate placebo effect, and other forward-thinking tactics are available if the pharma industry is serious about gaining the guidance they truly need.

Parma majors from USA recruit poor people from India via Christian missionaries. Recently, quiet a number of priests from Kerala were arrested after an undercover operation revealed a major operation involving religious conversion of Hindus to Christianity as well as recruiting them for experimental studies in exchange for money.

"But as with all things Web, when things go right, the power of connecting people is formidable. Take Susan Love's Army of Women, a site that launched in November 2008 to solicit volunteers for preventative breast-cancer research." To join the Army of Women and help find the cause of breast cancer, volunteer on the website, www.armyofwomen.org

Hi,

I would also like to introduce our startup in this space called TrialX - http://trialx.org - it uses Personal Health Record from Google Health and Microsoft HealthVault to directly match up patients to clinical trials and investigators.

One of the biggest challenges in trial recruitment is the conversion ratio. A patient shows up in a clinic but only 5% of them end up enrolling a trial. Technology companies such as TrialX leverage the power of full scale electronic clinical record and structured eligibility criteria to provide highly specific matches. For patients it just matter of few clicks and for investigators it saves the costly pre-screening.

TrialX also provides a first of its kind social network/community around Clinical Trials to share knowledge and create awareness about the studies and encourage a two-way dialogue between patients and trial investigators. http://blog.trialx.org/2009/02/building-social-and-community-driven.html

It is very encouraging trend to see so many Web 2.0 companies out there helping patients to enroll in research studies. Overall this contributes to advancement of science and saving lives.

Chintan Patel
Co-Founder, TrialX

I'm surprised this article did not mention RareShare (http://www.RareShare.org). They are doing great work for rare diseases.

Big Pharma can do anything it wants. It's co-opted doctors, NP's and the AARP. Look at Medicare Part D. written by Big Pharma and endorsed by AARP, passed by congress.