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The CERTAIN Patient Advisory Network team is honored to collaborate with many wonderful people across a number of projects and initiatives. Our partners engage with CERTAIN researchers in important and substantial ways. Working with motivated and passionate Patient Partners and Advisors not only enriches our research, it expands our research family. It is therefore with deep sadness that we say goodbye to one of our very first Patient Partners, Mary Roberts Scott. Mary passed away suddenly in late July, and her absence is deeply felt by all who knew and loved her. Below, Patient Advisory Network Director Danielle Lavallee reflects on our partnership with Mary and her effects on our work and lives:
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 Mary Scott began working with the Patient Advisory Network in October 2012 through a project centered on treatment approaches for vascular disease. Sarah and I quickly formed a bond with her despite much of our contact being by phone, as she lived in the eastern part of Washington State, separated from us by mountains that prevented her from traveling easily for much of the winter months. Her insightful comments and passion for patient involvement in research as a fundamental right made her a perfect partner for our work. Mary's role quickly expanded from advisor to partner, as she began to work with us to develop multiple project proposal submissions, including two funded initiatives where she served as co-investigator. She participated and co-presented in webinars and workshops and traveled with us to the 2015 PCORI Annual Meeting in Washington, DC, as a representative of our research team.
Mary’s passion for patient involvement in research stemmed from a desire to help ensure future patients have access to better information and evidence. Without the patient voice present, an opportunity is missed to gain an appreciation and understanding of challenges patients and their healthcare providers face when making decisions about treatments – especially when available evidence is limited. On a personal level, her involvement allowed her to pay tribute to her daughter, a medical doctor and teacher in obstetrics and gynecology, who passed away in 2011.
Mary made our work better by contributing her intellect and wit to every activity she participated in. An editor in a previous life, Mary was particularly enthusiastic about ensuring clarity in all written materials. She undoubtedly played a large part in ensuring high participant recruitment and retention rates through improving our messaging. She could always be counted on to have an informed and perceptive thought or comment on any question or topic that was thrown her way. Most notably, she challenged us and made us accountable for doing research differently – to think outside of the traditional agendas and dissemination channels that are the norm in research. We will miss her fiery spirit.
In this newsletter, we provide an update on two of the projects to which Mary contributed significantly over the past few years. We also invite you to take a look at the video we put together honoring Mary’s memory, her perspective on patient involvement in research, and her work with us, now posted on the Patient Advisory Network blog.
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Support Patient-Researcher Partnerships
To honor Mary and her contribution or our work, we established a memorial fund within the Patient Advisory Network’s administrative home in the Department of Surgery at University of Washington. Funds are designated for supporting patients partnering in research and activities that are intended to develop and deepen patient-researcher partnerships. As we build this fund, we will share plans for the fund’s use, as well as a process to apply for these funds to support Patient Partner and/or team education and training.
If you would like to contribute to the Mary Scott Memorial Fund, donations may be made to the UW Foundation, the Surgical Outcomes Research Center Excellence Fund, with a notation that the donation is in honor of Mary Scott. Gifts can be made online or by mail at UW Medicine Advancement, Attn: Gift Processing, Box 358045, Seattle, WA 98195-8045.
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Initiative to Support Patient Involvement in Research (INSPIRE)
The Initiative to Support Patient Involvement in Research (INSPIRE) is a project funded by the Patient-Centered Outcomes Research Institute (PCORI) that aims to build capacity that will facilitate patient-centered outcomes research (PCOR) training, support, and networking across diverse areas of healthcare for both patients and researchers. INSPIRE is a 4-phase project allowing an opportunity to learn from researchers and patients about their partnership experiences and ways in which we can support current and future work by making available tools an resources focused on supporting collaboration.
On Monday and Tuesday, July 18 and 19, 2016, the CERTAIN Patient Advisory Network held the INSPIRE Patient-Centered Outcomes Research (PCOR) Community Workshop in Seattle. The INSPIRE Workshop brought together a community of patients and researchers partnering on research throughout the Pacific Northwest. The workshop objectives included advancing learning about effective patient-researcher partnerships, discussing what is needed to further support patient-researcher partnerships in PCOR, and providing opportunities for networking.
Read more about the INSPIRE Workshop...
Mary served on the 6-member Steering Committee that leads the project. Mary was passionate about supporting patients to partner in research and was a valuable and critical eye in our review of existing tools and resources to support patient-researcher partnerships, as well as a thoughtful partner in developing the INSPIRE workshop agenda and materials. She was inspired by the people she met at the workshop and looking forward to compiling the feedback and work of the project as we enter the final stages - making tools and resources available to the community. Her contributions and presence is deeply missed by the INSPIRE team.
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Study of Methods for Assessing Research Topic Elicitation & pRioritization (SMARTER)
The Study of Methods for Assessing Research Topic Elicitation and pRioritization (SMARTER) seeks to determine the best ways for involving older adults (age 65 and over) in the early stages of medical research – in the identification and prioritization of research topics. To date, SMARTER has conducted a number of activities, including a mailed survey, online crowd-voting, in-person focus groups, and an online survey through the Amazon Mechanical Turk platform.
Read more about SMARTER...
Mary was an active and engaged member of the SMARTER team. From the beginning, she focused on the participant’s experience of our recruitment and instructional materials. She recognized this to be a new ask of the patient community and encouraged us to make our invitation to participate compelling. She took an integral role in making sure our materials were written in layperson-friendly language and free of jargon. She unquestionably contributed to the overall successful recruitment efforts for the study. We are entering our third and final year of the study. This year is dedicated to analyzing the data and telling the story of what we learned. Mary looked forward to seeing the results and helping to write-up the findings to share broadly. We will miss her voice and perspective as she always provided an interesting and insightful reflection to our meetings. This is a true loss for our team.
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Mary Roberts Scott
November 14, 1942 - July 27, 2016
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