Wednesday, October 10, 2012

The Good, the Bad and the Ugly: Science Reporting in Parkinson’s

Will eating berries lessen your risk of Parkinson’s? What about coffee? What’s the real story on coconut oil? Is deep brain stimulation a miracle surgery?

All of us, whether or not we live Parkinson’s, are faced each day with a barrage of headlines about what might help or harm our health.

After such headlines appear, PDF often receives an influx of inquiries asking:
  • Does this new drug/therapy/compound help Parkinson’s?
  • Is this new drug a cure? 
  • When will this new breakthrough be available?

The Good News
Scientists all over the world are conducting research into Parkinson’s. They are publishing their work in scientific journals and discussing it at meetings, and the media is reporting on it. This means that people touched by Parkinson’s disease have the chance to access the latest information about the disease online. According to this weekend's edition of the New York Times, which references studies by the Pew Research Center, people who aren’t connected to the Internet may actually be missing out on valuable health-related information!

The Bad and the Ugly
Not all sources report responsibly to you. Whether a source uses a sensationalistic headline, or leaves out important facts, they don’t always tell the real story.  For example, a story might report on deep brain stimulation as a helpful treatment, without communicating that the surgery does not stop disease progression. Another might report that smoking is associated with a lesser risk of developing Parkinson's, without telling you that picking up the habit isn't a good idea because more research is needed to understand why.

What Does It Mean?
So if you’re reading these headlines at home, how do you discern between fact and fiction? 

At PDF, part of our job is making sure you have quality information.  One initiative we developed last year was to include a "What Does it Mean?" component to the 50 or so scientific studies we cover each year. At the end of each report we ask “What Does it Mean?” and with the help of medical reviewers, science writers and research staff, we give you our best answer.

Sometimes we tell you that a drug could be available in the next five years. Other times, we let you know that a study was unsuccessful but is valuable for our understanding of Parkinson’s overall. Either way, we try to tell you the truth about how the science might impact your life with PD.

Other Strategies

Here are a few other strategies for assessing health information you find online:
  • Ask Your Doctor: If you are seeing a Parkinson’s specialist, they should be very aware of the latest research and be able to explain how it applies to you.
  • Evaluate Your Source: Where are you finding your information? Pay attention to who is publishing the information and when they published it. A few years ago, PDF published this article in our newsletter, with tips for evaluating whether a certain website is trustworthy. The Internet has changed, but these tips still apply.
  • Call our HelpLine: PDF’s HelpLine is available at (800) 457-6676 or email at from Monday to Friday, 9:00 AM to 5:00 PM to answer your specific questions about PD or specific news items you read.
  • Watch Our PD ExpertBriefings: PDF’s online seminars, including this year’s live series and more than 30 recorded seminars, are led by some of the most trusted experts in the field. Need information on exercise? Find it here. Want to know about experimental medications? We have that too.

What About You?

What's your impression of Parkinson's science in the media? Do you find reporting responsible? Are you confused by the headlines or do you find them clear?

What can PDF to bring you the best information about Parkinson’s disease and the latest scientific findings?

P.S. Click here to see PDF's latest science headlines and scroll down in each one to see our answer to "what does it mean?"


Mariodacat said...

I appreciate your updates so much. I really never see much media coverage on PD - just little snippets here and there. I know that coming from your site it should be factual, so I follow your blog. Both my husband and I have PD - only being diagnosed 1 1/2 years ago.

PDF said...

Mariodacat: Thank you so much for your comment. We are glad that you and your husband find the blog/news helpful. If we can ever help in any other way (information about PD, linking you to nearby support groups or PD specialists) always feel free to call our HelpLine at (800) 457-6676.

John C said...

I read these "scientific" headlines and I then wait for the information to change in another week or so.

They go something like this. "Caffeine is a possible cure for..." As time passes another study comes out that says "Caffeine is not a cure for..."

So I wait for the actual news to come from my doctor and the PDF.

Bettina said...

I signed up for Google news alerts on Parkinson's, and at first I read them all. Now, I'm almost afraid to open them. They're a blend of false hope, nutty stories...and maybe once in a while a good article. Thank you writing about this!

Anonymous said...

This is a really important post... with the amount of information being thrown at us on a daily basis, it's hard to know what is "valuable" vs. what is "ugly"! thanks for helping the PD community navigate all this information!

frederic/ said...

So...Can we take l-tyrosine with sinemet or not? So many sites, so many answers.