The Use of Surveys as an Advocacy Tool
International Bipolar Conference
June, 2001
Lydia Lewis, Executive Director 
Depression and Bipolar Support Alliance

• DBSA has been particularly successful meeting its mission by conducting constituency surveys and today I’m going to share some thoughts about using surveys as an advocacy tool.

• One challenge is to get our message out through the media. Although there are now thousands of television and radio stations, thousands of Internet sites and more publications than we could read in a lifetime, it’s very difficult to get media coverage because of the intense competition for airtime and print space. We’ve found surveys to be an extremely effective way to get our messages out there.

• From our support group survey (1997-98), we wanted to find out if participation in a DBSA group increased treatment compliance.

• In 1999, we launched our first Internet survey. We wanted to learn what role depression played in everyday life and what people’s attitudes toward treatment were.

• For our third survey, we wanted to learn more about the treatment of depression in the primary care setting (2000). There have been studies of the diagnosis of depression in this setting but not of what happens after the diagnosis is made.
  
• Finally, we had two objectives for our bipolar survey (2000):
  
• First, we wanted to get a "snapshot" of who has bipolar disorder and how the illness and its treatments has affected their lives
  
• And secondly, we wanted to see what improvements, if any, there have been in diagnosis and treatment since 1992.

• I’d like to quickly review the key findings from these surveys – the information we use as the basis for our advocacy

• Our support group survey determined what factors impeded treatment compliance. It also showed that participation in a DBSA group increased compliance, reduced hospitalization and made people more willing to take their medications and to put up with side effects.
  
• The on-line survey gave us some statistics to back up our position that better treatments are needed. We learned that far too many are not experiencing improvement, that side effects are widespread and negatively impact compliance and that a good percentage of people with depression are or were dissatisfied with their treatment.

• In our primary care survey, we gathered some powerful statistics showing that treatments are not effective. We now know where the communications gap occurs between patients and their primary care doctors. We can use this information to show both physicians and consumers where the disconnect is and how they can improve their communications. Finally, we now have many statistics showing that primary care doctors and people with mood disorders are not well educated about depression and its treatments.

• Our bipolar survey findings created an extremely powerful message – That despite all the advances in research and understanding of the brain and despite all the work fighting stigma and ignorance, things have not changed significantly since 1992 for people living with bipolar disorder. The time lapse between onset of symptoms and correct diagnosis is now 10 years. Psychiatrists are misdiagnosing at an alarming rate and people actually have to see more doctors now before getting a correct diagnosis than they did in 1992.
  
• All four surveys uncovered key findings we can use as terrific tools for attracting the media. And they continue to increase the number of invitations to present we receive to present these findings.
  
• Here’s a quick overview of some success we achieved through our surveys.

• We used the support group survey results to create DBSA’s first poster, presented at several scientific conferences. We also created a brochure to hand out at our poster presentations. It’s been a terrific tool for fundraising because people want to financially support the groups because they have such a positive impact. It also helps with recruitment; the findings motivate doctors to refer patients to our groups.

• Our on-line survey received quite a bit of media attention, especially the reasons why people stop taking their antidepressant. We were asked to present this survey’s findings at the 2000 ECNP
  
• The primary care survey received very widespread media (print, television, electronic) attention. We were particularly pleased with the JAMA article because we want doctors of all specialties -- not just psychiatrists -- to be aware of our organization and how we help people live better lives.
  
• There was also great media interest in our bipolar survey. We presented the findings twice at this year’s APA. One presentation drew 1,600 people. We hope to get more mileage out of this survey including making additional presentations and publishing the results in a professional journal.

• We’re always looking for ways to maximize our exposure without additional cost. We’ve been able to combine two programs to optimize results
  
• The bipolar survey found that people wait an average of 10 years from onset of symptoms to correct diagnosis. By completing the Mood Disorder Questionnaire – MDQ – results can put bipolar disorder on a physician’s radar screen

• I’ve shared some of the specific outcomes we’ve with our surveys. But there are intangible results as well.

• We will use our findings in many future presentations and articles. And when others quote our findings, it increases our exposure.
  
• Our Calls to Action are exactly that – Specific actions we want our audience to take – be it legislators, physicians or researchers. All nicely summed up in a publication.

• Surveys, if done correctly, are a terrific tool for advocacy. But they should never be embarked upon without significant thought. We are asking a great deal every time we want our constituents to divulge personal information and to share their feelings.
  
• A poorly developed objective or a poorly executed survey can actually do more damage than good.

• DBSA may take a break from surveying right now. – We don’t want to be seen as the Gallup organization of the mental health field.

• But we will continue to maximize the exposure of our survey findings and use them to strengthen our advocacy efforts.