Make Time, Make Money, Make a Difference

There’s been a lot of activity lately in the hemophilia community around market research. In fact, I’ve never seen it so busy! We often are hired to help invite bleeding disorder patients and caregivers (those who care for children 17 and under) to participate. So what are they, what do they do and how do they work?

Pharmaceutical companies sometimes have new reconstitution devices that they need to test run before they bring them to market. This makes sense as they can’t invest all the research and money only to find out that consumers don’t like them. Sometimes these are actual clinical studies and sometimes they are market research. These usually require patients and caregivers to be present, so they are held in facilities across the country. I know some that will take place in California  and one in Massachusetts soon.

Sometimes, pharma just want to know what you think: about products, efficiency, treatment. This can be done in person (sometimes they hire market researchers to come to your house!) or on the phone, or increasingly via a website.

They are almost always paid, so you can make good money in a short period of time for participating. The in-person interviews tend to pay the most. Sometimes $150 for a one to two hour interview. But even the on-line or web based ones pay: $50 to even $100 for a 30 minute survey.

The most important thing to know is to protect your privacy. You don’t want to give away identifying information to just anyone. We go to great lengths to protect each of our participant’s privacy. So you get the benefits of making a difference while making some money without worry!

If you want to participate, let us know! We are always looking to include more patients and caregivers in our studies. Just email at laurie@kelleycom.com and we will keep our eyes open for you as a participant!

Great Book I Just Read
The Adventures of Tom Sawyer by Mark Twain

This is a classic, of course, and for great reasons. Witty, wonderful story, and no one sees into the heart and soul of what boys are made of like Twain. Young Tom Sawyer grows up in St. Petersburg, Missouri, where his biggest concerns are how to trade up marbles, avoid school and win the heart of Becky Thatcher. Until he witnesses a murder, in which an innocent man is blamed. Then begins a long journey to maturity that includes buried gold, being trapped in a cave and a final battle with “Injun Joe,” the true murderer. Five/five stars.

Who’s Looking At Your Genes?


A society which respects civil liberty realizes that the freedom of its people is built in large part, upon its privacy. —John Fitzgerald Kennedy

Massachusetts is known for being the birthplace of America, and location of the Revolutionary War. Seems we started another revolution this week. The Forum on Genetic Equity is pushing to pass a MASSACHUSETTS GENETIC BILL OF RIGHTS— a bill to protect information about our genetic make-up, and defects. Think about it: what could employers, insurance companies and others do if they knew about your genetic make-up?

Genetic discrimination could be a true threat to personal freedom and life choices. Databases of genetic information are being compiled daily with few rules to guide their use. The same is true for genetic material; this information could be used to discriminate against people based upon their genetic make-up.

From The Forum on Genetic Equity website: “This legislation marks a major change in the way we think about genetic discrimination. When passed, this legislation will put individuals in control of their genetic material and information.”

And this: “The state action in Massachusetts is credited with being a major factor creating the political environment which made it possible for Congress to enact the Genetic Information Nondiscrimination Act (GINA) in 2008. While GINA is considered by many to have been the single most important civil rights legislation adopted in this new century and makes it illegal to use a person’s genetic information or genetic material as the basis to deny anyone health insurance coverage or employment, technological advances have outstripped both federal and state protections. The MASSACHUSETTS GENETIC BILL OF RIGHTS deepens and broadens individual rights by proactively working to end all forms of genetic profiling while safeguarding individual privacy rights.”

Steve May, executive director, wrote just today, “The response to our last message about the Massachusetts Genetic Bill of Rights has been nothing short of unbelievable. Over the last 72 hours our mailing list has nearly doubled. The public is clearly gaining a sense that the misuse of genetic data is an emerging civil rights concern.”

We respect privacy here at LA Kelley Communications. In fact, there was no HemaBlog yesterday as our website was down for a bit, because we’ve invested in new privacy mechanisms, to protect you when you contact us, browse us or place an order. Privacy is a huge issue. Ensure you know how to protect yours. Check out the website www.GeneticEquity.org today!

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