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  • 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 ...

  • Thanks to all who attended our February PEC All Hands meeting, and thank you to Mireille Muller for her expert leadership. The meeting slides are available in the PEC library, and also uploaded in this note. Below is a link to the meeting recording.  ...

  • Wendy, thank you for posting this opportunity. We will be sure to mention it at our next PEC All-Hands meeting Thursday, 13 February at 11 AM ET . Please let us know if there are any deadlines related to participation, and feel free to join our All-Hands ...

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