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  • Dear PEC,  Thanks to all who attended our DIA PEC meeting on Thursday, July 16. We had a good discussion with feedback about the first virtual DIA Annual Meeting, and we also started to brainstorm topics and priorities for our community to cover in ...

  • Thanks to all who attended the PEC meeting. The slides and recording are now available through the links below. Looking forward to "seeing" everyone at the Annual Meeting!   Recording: https://diaglobal.zoom.us/rec/share/uspYIIDp61hOXJ3D50fTS4EFHKnhaaa81iYa_qANnU0JStAPOk88Do347B4ZIV1S?startTime=1591888215000 ...

  • Many thanks to Gwen Mayes and Kevin Freiert for leading our discussion of Experts by Experience, how to elicit and integrate patient narratives into drug development. Links to the session's slides and recording are below. Slides: https://communities.diaglobal.org/viewdocument/may-14-2020-experts-by-experience?CommunityKey=7a9ec23b-28ef-4a09-b5a6-73949adc0500&tab=librarydocuments ...

  • http://dx.doi.org/10.1111/hex.13064 This new publication in Health Expectations provides practical background, methodologies and metrics as meaningful patient engagement in research evolves. While it is focused on people with Parkinson's Disease, ...

  • Hello DIA PE friends, Rob from admedicum here. Hope you are well.  We are organizing 2 more roundtables on May 7 and 8 at 16h CET Berlin, morning time in the USA. I attach a summary of our first roundtables, and we will dive deeper this time. Each ...

  • This was a great session. It is too bad we did not have more sponsors represented.  As a service provider for pharma and patient groups, this talk gave me some ideas for reframing our value proposition. The question came up about separating the value ...

  • I recommend taking a look at these videos as well.  One thing to look for is when organizations are doing something FOR patients and caregivers versus WITH them.   ------------------------------ Kevin Freiert Owner/Principal Salem Oaks Consulting ...

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  • Just attended the Reg Intel Working group (Reg Affairs Community) weekly update on the recent swath of Guidances put out by FDA, EMA and China.  What an incredibly valuable use of time!!  Great to hear industry experts from all over the world providing ...

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  • Hi PEC Community, By now I imagine you all have seen the new regulatory guidance for industry for  FDA and MHRA  for clinical trial management in the time of COVID-19.  What complementary activities are patient advocacy groups doing to further protect ...

  • REMINDER: Please join our PEC All-Hands meeting this Thursday, 3/12 at 11 AM ET to discuss Operational Metrics for Patient Engagement. Topic: Operational Metrics for Patient Engagement Time: Thursday, March 12, 2020 11:00 AM Eastern Time (US and ...

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