Posts Tagged ‘pharmaceutical’

The Fundamentals of Pharma/Patient Group Interactions

January 8th, 2010

The end of 2009 and beginning of this year have been spent on determining how pharmaceutical companies in particular and corporations in general can engage effectively and appropriately with consumers and patients in online environments whether social media or static.

Lost in the conversation is that pharma has not yet perfected how to engage effectively and appropriately consistently in the real world with patient groups and communities.  As my basketball coach/father would always say, “Never forget the fundamentals”.

I believe the fundamentals of working with patient groups and communities (as well as their physician counterparts)  can be captured by my three R’s of strategic alliance development.

Strategic alliance development is the cultivation and active engagement with select stakeholders in a manner that is (1) relevant (2) respectful, and (3) recurrent.

Relevant – Engage in a fashion that reflects you understand what the mission, priorities, and capabilities of the organization.  What are the needs, gaps, and concerns of that patient population?  Make sure your science, messaging, and outreach meets those.  Likewise, relevant organizations and opinion leaders will be those that have the visibility, credibility, and capacity to advance your specific business objectives.  Every organization is not an appropriate partner for every objective.

Respectful – Patient groups are not waiting to do your bidding and patient advocates and association leaders are important players in healthcare.  Organizations are often eager to co-create meaningful programs, events, and informational experiences when treated as full partners or leaders of the process. Also, don’t send junior marketing people or your agency minions to senior level meetings.  Vice president-level or medical affairs participation may be necessary to demonstrate a serious commitment and substantive intent.

Recurrent – Frequent and consistent interactions and communications are valued by patient groups beyond financial contributions and differentiate mere corporate sponsors from true community members.

The ultimate goal in strategic alliance development is to be valued by the community as a member of the community. Membership validation translates into positive market share and share of voice.

Let’s get it right in the real world 1st.

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

November 13th, 2009

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.

A Patient’s Perspective on Day 1 of the FDA Public Hearing on Social Media

November 12th, 2009

First and foremost, thank you HealthCentral, for hosting the afterparty. I admit, though, that this is the 1st time I’ve left a great cocktail party to go blog.

Overall Impression: Very well done and informative.  Presentations were thoughtful and most included data.  Too many PR agencies battling to promote their digital agencies and have the sexiest graphic explaining the extent of pharmaceutical responsibility. Companies with thinly veiled “please don’t kill my business model” presentations advocating to preserve sponsored links. Consistent results from research on patient and physicians Internet usage was reassuring.  Commonsense consensus across presentations on regulated entity accountability for content in proportion to the extent of their control.

Best Presentation: WEGO Health

Just when I had given up on  hearing the patient’s viewpoint, WEGO Health gave us the actual words of health activists (top 10% of engaged patients who create and interact with content and fellow patients across multiple platforms).  WeGO Health activists welcome pharmaceutical company participation in social media (as do I) IF companies bring value to the table.  90% think that companiesalso have a responsibility to correct misinformation about their branded products and yet realize that it is impossible to monitor all mentions on the Internet. Regulation of the pharmaceutical and device industries should not come at the cost of participation.  The full survey can be requested at

Best Presentation Title: Envision Solutions “Health Searchers: Blind, Irritated, & Impatient”

Scariest Presentation: VuMedi

VuMedi creates communities for the 80-85% of surgeons (he used orthopods as an example) who perform the majority of surgery types only once or twice a year a way to learn the surgery the night before the scheduled procedure or exchange comments with higher volume proceduralists.

Worst Presentation: National Research Center for Women & Families

I have a great deal of respect for this organization and so I was so disappointed by their call for the FDA to issue more regulation and more severe penalties for pharmaceutical interactions on the Internet, completely out of step with the flexibility that almost all others outlined.  The presentation also reflected a great paranoia about potentially ghostwritten content (“I don’t know who’s paying for this content” —  take 10 seconds to google and look for the company name in the corner or do 1-click.) and Wikipedia. (Really, is the FDA supposed to do something about Wikipedia?)

Most Intriguing Solution: FDA seal of approval symbol for credible sites (PhRMA and others)

Interesting Factoids:

  • 83% of Internet users searched for health information (Pew Internet survey)
  • 13% of hospitals use social media (Acsys Interactive)
  • 78% of condition sufferers go online (comScore)
  • 36% of consumers who view online product information then go seek a physician (Google)
  • 27% of consumers who view online product information change their behavior (Google)
  • 4.6 Billion (with a B) searches on health keywords in the US in last 3 months of 2007 ( Google)

Key Takeaways:

  1. Social media should be important to FDA and Pharma because it is important to patients and physicians.
  2. Patients welcome pharma and device participation in social media if they lead with value not branded message.  Patients first!
  3. Regulated entities should be held accountable for content in proportion to their control whether on their own  or 3rd party sites but their responsibility for independent content and content changed by independent entities should be limited or none.
  4. Full prescribing information with risk and benefit should not be more than 1 click away from branded product related commentary on pharma-controlled or collaborative sites.  Amount and proximity of fair balance information should reflect audience and potential space limitations of medium.

Full information about the FDA meeting can be found at