List date(s) this work was published or aired.
October, 2011
Provide a brief synopsis of the story or stories, including any significant findings.
As part of the 30th anniversary of Pharmaceutical Executive magazine, this feature takes a look at the beginning of the patient advocacy movement, rooted in the AIDS crisis of the 1980s. From there, the piece explores how the increasingly influential voice of the patient in health care has changed the landscape, highlighting the work of the National Organization of Rare Disorders, the Alzheimer’s Foundation of America, and The International Cancer Advocacy Network.
Explain types of documents, data or Internet resources used. Were FOI or public records act requests required? How did this affect the work?
I conducted telephone interviews with leaders at each of the organizations named above, along with Brian Loew, cofounder and CEO of Inspire, and Greg Simon, senior vice president of the Patient Engagement Group at Pfizer. I also consulted the FDA website to gain a better understanding of FDA policies such as Expanded Access Programs and Fast Track initiative.
Explain types of human sources used.
I conducted telephone interviews with leaders at each of the organizations named above, along with Brian Loew, cofounder and CEO of Inspire, and Greg Simon, senior vice president of the Patient Engagement Group at Pfizer.
Results:
none
Follow-up (if any). Have you run a correction or clarification on the report or has anyone come forward to challenge its accuracy? If so, please explain.
none
Advice to other journalists planning a similar story or project.
For this piece, I tried to focus on discovering the beginning of the story of patient advocacy, and then to follow the timeline to discover how the patient voice has become more influential over the past 30 years. It’s crucial not to overlook background information when writing a reflective piece such as this one on a broad topic. Even if you think you know or understand some trend or policy, dig a little deeper–why did it get started? How has it affected various stakeholders? Is change still on the horizon. Sometimes it is helpful to take on the role of a novice reporter, assume nothing, and start at square one.