January 29, 2007: 12pm in 375 Longwood: IRB Disparity Meeting with Karen Emmons, DFCI

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Home < January 29, 2007: 12pm in 375 Longwood: IRB Disparity Meeting with Karen Emmons, DFCI

Agenda

To discuss the IRB enrollment disparity issue from the yr1 progress report for the U41.

Attendees:

  • Karen Emmons, DFCI (karen_m_emmons@dfci.harvard.edu)
  • Karen Burns White, DFCI (karen_burnswhite@dfci.harvard.edu)
  • Clare Tempany, BWH (ctempany@bwh.harvard.edu)
  • Tina Kapur, BWH (tkapur@bwh.harvard.edu)
  • Kim Lawson, BWH (klawson1@partners.org)

Notes

  1. (KE) What is the source of the projections in the IRB form and is the main question the actual data needs to match projections? Response (TK) NIH clarified that meeting the projections wasn't enough if the projections are not balanced. The source of the projections is ... (CT)
  2. (KE, KB) Suggestions for outreach:
    1. Getting local cancer data for Boston. For example, there were 600 cases of cancer in the Boston minority population last year.
    2. Can we reach out to other areas to get patients?
    3. Can we make layperson-understandable material available about these IRBs that could be disseminated through channels that KE and KB routinely work with?
    4. Can we get patients from the program to share their experience in outreach events?
    5. Potential avenue for outreach: Phen (Prostate Health Network) sponsors an african-american men support group in DC. Thomas Farrington is the contact for it. Gary Bennett, DF faculty, speaks to them.
    6. Patient Navigator - a person called a patient navigator helps navigate people from diagnosis through treatment. On DFCI education van. Perhaps we can provide them with materials about the BWH procedures.
    7. Potential partnership with a minority serving hospital in the south, such as Grady or Lucille at Howard. (This could be similar to the recently established effort w/ NYC: CT).
  3. (CT) Current BWH outreach efforts include an annual information symposium held at the Newton Marriott for about 200-300 people. Organized by Anthony Dimico who is the primary source of patients for CT's U41 IRB.
  4. The above discussion was mostly focused on prostate because that is the area that KB and KE had looked into for the meeting. One suggestion regarding getting started with neurosurgery recruitment was:
    1. Check with Mark Johnson (BWH) and Will Curry (MGH) to see what their experience with IRB disparity management is. KB and KE offered to participate in discussions, if needed.


Action items

  1. Send information to KE about the Meningioma Day (TK) (http://www.brainsciencefoundation.org/matriarch/MultiPiecePage.asp_Q_PageID_E_164_A_PageName_E_TMPevents)
  2. KB to talk to Sarah about disease specific efforts
  3. KB to connect CT to Phen/Farrington about her potentially being involved with the support group
  4. CT to check with Anthony Dimico about whether (a) it would make sense to include Tom Farrington in the annual newton marriott symposium (b) disseminate information about the symposium through the PHEN electronic newsletter.
  5. KB to send TK a pointer to the PHEN newletter.
  6. TK and KL to work with CT to create materials to advertise Newton-Marriot symposium that could be included in the PHEN electronic newsletter.
  7. TK and KL to work with CT and AG to create materials catering to laypeople explaining the IRB procedures. KE and KB will help turn these into flyers and helping disseminate through above-mentioned channels.
  8. KE will contact former-CT patient who is the CFO of ACS and spoke very highly of his experience as a patient in the program.
  9. TK to check with Alex Golby regarding contacting local neurosurgeons, MJ, WC.
  10. TK to send pointers to NCIGT prostate and neurosurgery programs to KB.
  11. KB to look into Grady/Howard partnerships.

Followup

  1. 1/29 - KB sent Phen newsletter to TK. TK sent Meningioma day flyer to KB.
  2. 2/3 - KE contacted Tom Sellers at ACS, and he's amenable to working with us. She is investigating if ACS is open to a broader partnership.
  3. 4/26 - KB arranged for CT to speak at PHEN meeting on 6/13.