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The Patient Advisory Network Steering Committee is pleased to announce that it was able to make 2 awards from Mary's Fund for 2019!
Marshall Conley has been a Patient Partner on a research team at Indiana University for the past several years and has worked on multiple projects that focus on anxiety. Marshall applied to Mary’s Fund to support the ongoing work he is contributing to the development and testing of a tool meant to increase awareness of anxiety among low-risk chest pain patients in the emergency department, as well as on a project that is sharing the Photovoice technique among members of anxiety-focused community support groups.
Dr. Elizabeth KvachDr. Elizabeth Kvach is a family physician and the Medical Director for the LGBTQ Center of Excellence at Denver Health. Liz is part of a team that has led system-wide efforts at Denver Health to expand care and access to the transgender/ nonbinary (TNB) community in Denver, including primary care, hormone therapy, and gender confirming surgeries. Liz and her team plan to use the Mary’s Fund award to expand research-focused partnership with transgender women. The Mary’s Fund award will support the development of a community advisory board to inform ongoing healthcare and research priorities related to the vaginoplasty program at Denver Health.
Congratulations to Marshall and Liz! Mary Scott, for whom the Mary’s Fund award was named, was particularly passionate about ensuring that everyone has a voice in their healthcare and in healthcare research, so we know she would be particularly proud of this year’s awards. Each awardee will report in future newsletters on the status of the projects, and we look forward to hearing more soon!
 
What is Mary’s Fund?
Mary Roberts Scott was a founding CERTAIN Patient Advisory Network Patient Partner. She partnered on several research projects and engagement initiatives from 2013 until she passed away unexpectedly in July 2016. Mary was a strong proponent of patient involvement in research and healthcare delivery. In her memory, Mary’s Fund was established to support and deepen patient-researcher partnerships. Mary’s Fund awards at least one annual scholarship of up to $500 to support, develop, and deepen patient-researcher partnerships. Donate to continue the efforts of Mary’s Fund by contacting Sarah Lawrence.

INSPIRE Research Portal New Resource Alert


Lessons that research teams learn around how to build and sustain partnerships are not always part of the work that is shared in communication and dissemination of study outcomes, and sites like the INSPIRE Research Portal have been developed to serve as a central repositories of knowledge, tools, and trainings that teams have developed to guide their own partnerships. The INSPIRE Research Portal brings together valuable resources from across the research landscape to make finding and adapting tools to support your partnerships efficient and easy. New tools and resources are frequently added. Have you developed or used a resource that has helped you build or strengthen a research partnership? Consider submitting it for inclusion in the INSPIRE Research Portal!
 
One such recent addition is the PORTAL project’s Patient Engagement Toolkit, a web-based resource that draws from the experience of the now-completed PORTAL project to share tools for use in recruiting and training patient partners, as well as educational resources for patient partners to learn how to partner in research.
 
Longtime Patient Advisory Network partner Janice Tufte was also a Patient Advisor on the PORTAL project team and was a contributor to the development of the PORTAL Patient Engagement Toolkit. "I love the fact that our PORTAL Patient Engagement Toolkit was developed so that other research teams and stakeholders are able to replicate and/or adapt the existing helpful documents and tools to better reflect their own projects and work,” she says. “This patient-researcher co-designed toolkit was developed in hopes that others do not have to start at square one when engaging patients. They can use or modify our developed materials as they might need."
 
Check out other resources recently added to the INSPIRE Research Portal: 

PCORI Launches Engagement Resources Repository


The Patient-Centered Outcomes Research Institute (PCORI) is committed to advancing patient-centered, stakeholder-engaged research and the meaningful involvement of patients, caregivers, clinicians, and other healthcare stakeholders throughout the entire research process. Over the past decade of funding awards, PCORI-funded projects have produced a large number of engagement-related tools and resources to support involvement in research. To encourage the spread of best practices, PCORI has developed a repository of materials developed and used by PCORI awardees. The searchable peer-to-peer repository includes resources that can inform future work in patient-centered outcomes research. Browse the resources included in the PCORI Engagement Tool and Resource Repository.
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