When YOU Are the Product

Stay In the Know

Colin and I follow news reports of patient advocacy groups very carefully because we often see parallels between our groups and find that they provide insights on trends, what to expect, etc. If you're interested in what we're reading, you can see the articles on our homepage under "Stay in the Know," on our Facebook timeline, and on our Twitter feed (@PIDCompetence).  

With all of the news stories lately with the hubbub surrounding Facebook and selling your data, there was an interesting release from the Kaiser Health Network called Pre$cription For Power, which follows donations from several pharmaceutical companies to patient advocacy organizations. Many of these donations that come directly from the companies come in various forms and can be difficult to track, so those listed in the database are merely the starting point. 

All of these articles coalesce around a topic I've wanted to discuss for some time as a patient community. How can we identify what is useful information and what is marketing? The distinction can be difficult to draw, and so I believe it's good to have a conversation so that you, as an informed patient, can better determine what is right for you. 

Does it seem like splashy materials meant to convince you that one product is somehow better than another? Then it's probably pure marketing. Not that there are no advantages to some drugs for some patients, but it is ok to be wary of anything that sounds too good to be true. There is usually something under the surface, and we are fortunate as a community to have product choice, and organizations are fighting to keep that choice available for us. 

You Are Not The Only One

Also, keep in mind that your physicians are also being marketed to by companies. Some physician offices are more successful than others at keeping this out of their clinical decision-making, but if a pharmaceutical rep. is always in their office, it can be easy to prescribe the latest-and-greatest because it's the thing at the top of your mind. The same goes for everything from asthma medications to antibiotics to immunoglobulin therapy. Some of these new drugs have reasonable price tags in line with what the other drugs in their class cost. Many do not. Do not be afraid to ask your physician or team why they chose a specific product, many times it may be due to success stories from other patients, and that is great!

So how can we tell the difference? It's certainly not easy, but the first rule of thumb is that if you can't tell who they're selling to, then they're selling to you. Or they're selling your information. That's an important distinction to draw. Sometimes, we sell or give our information knowingly and for a specific purpose, as I do when participating in clinical trials. Sometimes, we sell or provide our information without necessarily appreciating that's what we're doing - like when we go to drug company sponsored dinners and events or participate in marketing surveys. Those things aren't free. They cost your data. 

That doesn't sound so bad, and it isn't, for the most part. What is bad is when you enter into these situations without the presence of mind to understand that your information/health data is what is being bought/sold. The reasons these pharmaceutical companies give money to these patient advocacy organizations are numerous, but one of those reasons is to have access to you - to your eyes, and ears. A lot of significant resources and programs have come from these sponsorships, but it's something we all need to be aware of across platforms - not just online, but also in person. Nota bene, friends, and please share your thoughts!