Use of a Physician-based Social Networking Site to Enroll Patients in Observational Research

Patients with myeloproliferative neoplasms (MPN) experience various degrees of morbidity, ranging from no physical complaints to incapacitating fatigue and abdominal pain due to splenomegaly.  To lay the groundwork for a large-scale systematic survey focusing on quality of life (QOL) and willingness to pay for new targeted therapies likely to enter the market in the next few years, this pilot study will assess the feasibility of a unique patient enrollment mechanism.  Our approach involves recruiting patients through Sermo, the largest online physician community in the U.S. with over 112,000 members, including over 2,300 hematologist/oncologists.  There are several specific aims of this project:

  1. Demonstrate that hematology/oncology physicians can be reached through Sermo and will complete a brief survey.  A total of 500 physicians will be contacted initially.
  2. Verify through the survey that responding physicians can identify MPN patients in their practice, that there are sufficient patients to make a larger scale substantive study feasible, and that these responding physicians will invite their MPN patients to permit future contact by investigators from Boston University for participation in an observational research study.
  3. Show that an adequate number of patients will agree to be contacted by the research team by posting their contact information on a secure website at the Slone Epidemiology Center.

Investigators and Study Staff

Investigator:

David W. Kaufman, Sc.D., Principal Investigator

Study Staff:

Judith P. Kelly, M.S., Epidemiologist

Study Details

Sources of Funding:

  • Incyte Corporation
  • Onyx Pharmaceuticals
  • Sanofi-Aventis

Study Period:

February 2013 to April 2013

Contact Information

David W. Kaufman, Sc.D., at 617-734-6006 or dwk@bu.edu