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A New Year Message from Patient Advisory Network Director Danielle Lavallee
 Happy New Year! The change in the calendar year serves as a natural point to both reflect back and look forward. 2016 included many highs and lows for the CERTAIN Patient Advisory Network. We spent a good portion of 2016 learning from our network of researchers and patients about successful partnerships and important areas for future focus through our work on INSPIRE. This culminated into a fantastic workshop in July, where we spent 2 days learning and discussing how we can continue to build capacity for successful patient-centered outcomes research and patient-researcher partnerships (read the INSPIRE Workshop report here). In addition, we met a lot of new friends in 2016 – our network grew by 50%! Our thanks to those of you who have spread the word of our group, helped facilitate introductions and connections, and highlighted our work on social media (follow us on Twitter and Facebook!).
While we were making great strides in the work of the Patient Advisory Network, 2016 also brought great loss to our team. Just after the July INSPIRE workshop, we said goodbye to our beloved Mary Roberts Scott, a founding member of the CERTAIN Patient Advisory Network and our close collaborator, partner and friend on all things relating to the Patient Advisory Network. Although she is deeply misse,d her spirit lives on – one of our INSPIRE Steering Committee members asked a question during a recent discussion that has become somewhat of a theme to our work since then – “what would Mary say?” To tangibly honor her memory, we established the Mary R. Scott Memorial Fund to support efforts to expand patient-researcher partnerships. We will soon announce plans for the first award in 2017.
Click here to read about the Patient Advisory Network's priorities in 2017!
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Partnership Opportunity: Developing Tools to Support Statistics Education for Non-Researchers
Patient and stakeholder engagement is a core tenant of patient-centered outcomes research. However, active engagement by stakeholders in data collection and analysis frequently requires specialized statistical expertise, resulting in many patient and non-statistical stakeholders being excluded from an important aspect of research. Dr. Yates Coley, a biostatistician and Assistant Investigator at Group Health Research Institute in Seattle, is proposing a project to develop web-based, interactive educational tools that explain statistical concepts central to patient-centered outcomes research to patients and other research stakeholders. Educational materials will be a combination of short video tutorials and interactive demonstration apps that teach and allow exploration of key ideas including randomized vs observational studies, confounding, and missing data. Dr. Coley is looking for patient and clinician stakeholder partners for this project. If you are interested, please contact her at coley.r@ghc.org.
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Patient Advisory Network Goes to Washington: 2016 PCORI Annual Meeting Recap
by Sarah Lawrence, Patient Advisory Network Manager
The 2nd Annual PCORI Annual Meeting was held in National Harbor, MD, on November 16-19, 2016. This year, I attended as the sole representative of the Patient Advisory Network and focused my energies at the meeting on learning about and connecting with other PCORI-funded project teams.
This year’s meeting was even better than last year’s, with over 1,200 patients, researchers, care partners, community advocates, clinicians, policymakers, and others in attendance. This year’s conference theme was “Changing the Conversation about Health Research” and focused on how PCORI has changed research to be more patient-centered and stakeholder-driven, and how this shift in focus has produced better research.
Click here to read more about the 2016 PCORI Annual Meeting!
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