A Patient’s Perspective on Day 2 of the FDA Public Hearing on Social Media

November 13th, 2009 by DCPatient Leave a reply »

Since I have great confidence in my fellow bloggers and all the fabulous Twitterati who followed today’s second day of the FDA Public Hearing on Social Media to provide detailed summaries of the day, I will take a different direction and offer my perspective as a patient on the hearing and the FDA’s  as well as pharmaceutical companies’ roles in social media.

I’ve been on branded prescription medication since I was 13 and first diagnosed with ulcerative colitis (inflammatory bowel disease), more for primary sclerosing cholangitis (autoimmune liver disease), more post-liver transplant, well you get the gist, so I have experienced my share of side effects and even a few adverse events and NOT ONCE did I think to make a report to the FDA.  NOT ONCE. Now I’m often chided for not being the average patient, but that further strengthens my argument here.  I’ve presented at NIH and not thought to report, I’ve worked with pharmaceutical companies and never thought to report, I’ve been a member of the Alliance to Strengthen FDA since it’s first year and never thought to report.

Why not? Well, my key concerns at the time were self-centered – what is going on? What is causing this? How can I make it stop?  For many of these answers I do turn to the Internet first, for context –is this normal? expected? will it resolve on its own? is there something simple I can do? —  but for resolution I ask my physician, because only in coordination with my doctor can I make the necessary adjustments or stop taking the medication. Reporting to FDA was not going to change my treatment.  It could have, in retrospect, changed treatment for others in even a more impactful way than sharing my experiences have changed treatment for fellow patients in social media and regular social environments.

Today’s hearing has impressed upon me how much we need a broadscale public relations campaign for FDA MedWatch or whatever new simplified reporting format takes its place.  (And yes, the federal appropriations, not user fees, to allow FDA to  do its many jobs.) Patient forums abound with people who not only want to help themselves, but help all patients standing with and coming behind them.  Social media and online reporting of patient experiences, good and bad, with medications can be a powerful force for improving healthcare by providing information for physicians, public health researchers, as well as regulators to access.

And Pharma – I am interested in the FDA-approved language and data (safety and efficacy)on the branded medications I take being easily accessible on the Internet and understandable.  I am not interested in pharmaceutical advertising, being approached by a pharmaceutical representative, or any overt contact of any kind.   I am happy to have them listen and correct grave misinformation if they believe that the particular forum is not sufficiently self-policing. Medication is not like shoes. I am happy to look at shoe advertising, talk to shoe people, and if the president of Zappos would like to come to my house, I’d bake him a cake.  I take medications because I need them and I’ve worked out a plan with my health care professionals of what, when, and why I will take them.  I welcome tools and information to boost my understanding, adherence, and coping, but I’d prefer if it came through a medical society or patient organization (even if pharma sponsored, I’d feel that it has been reviewed and tailored by people with interests more aligned with mine).

Bottom Line: I’m not as afraid of health social media because I believe in the intelligence, passion, persistence and generosity of my fellow patients (and I still believe in doctors). FDA has a strong role in ensuring that information by regulated entities (under their control or influence) is accurate and meaningful ( my preference over exhaustive) and that reporting mechanisms when there are negative interactions with that material or the products are well known, convenient, simple to fill out andsend.  Pharmaceutical companies and other regulated entities should listen more than talk and only interact to provide value to patients, as defined by patients.

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  1. Lisa Emrich says:

    Wonderful, wonderful post!! Thank you for attending the hearings and speaking up on behalf of the patient’s point of view.

    I understand that you were present at HealthCentral’s even last night. I write for HealthCentral (on MS and RA) and certainly wish that I had met you. I’ve seen your tweets and truly appreciate your contributions.

    Keep it up!!

    • Nancy says:

      I am really interested in blogs for MS. Are there any that are sponsored by the medical field or pharmas (can they?) that offer the most information about the various meds out there? I have watched the YouTube videos about administering shots, but I want to keep up to date with the latest news about the newest advances. Any suggestions? Thank you in advance.

  2. Rob Halkes says:

    Great insight into things that really matter with regard to patients’ concerns in pharma and health, as well as patients’ needs for really meaningful information and (!) the need to be reassured through interaction and dialogue with trusted authorities. I think that this is the key underlying need! Isn’t it?
    Thanks for these insights!
    Rob Halkes

  3. DCPatient says:

    Lisa, and Rob, thank you so much for your comments and support. Lisa I look forward to reading more of your work on HealthCentral and hope to run into sometime soon.

    Be well

  4. Kelly Young says:

    “Pharmaceutical companies and other regulated entities should listen more than talk and only interact to provide value to patients, as defined by patients.” This last is key because you are drawing a boundary line, even if it is only in sand. We, the patients, are the most important voice and the one last heard. We must be taken seriously. Thank you Donna for doing your part. I look forward to reading more of your blog.
    .-= Kelly Young´s last blog ..Being Blessed While Having Rheumatoid Arthritis =-.