Patient Voices Network Blog

CERTAIN Patient Advisors Represent at CUE Summit

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By Janice Tufte, Yanling Yu, and Mahshid Lotfi

The Consumers United for Evidence-Based Healthcare (CUE) Summit was held at the New York Academy of Medicine, on March 19, 2017. Three of us from the CERTAIN Patient Advisory Network were honored to have had the opportunity to attend this year. Yanling Yu, representing Washington Advocates for Patient Safety, Janice Tufte from Muslims for Evidence Based Healthcare, and Mahshid Lotfi, a Patient Advisor with CERTAIN at the University of Washington, were all actively engaged during the summit, inquiring minds asking pertinent questions to the speakers addressing our concerns.

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Dear Jessie, I am finally taking your advice.

CERTAIN Patient Advisory Network Director Danielle Lavallee introduces a new blog series that focuses on sharing tips, tools, and lessons learned through learning how to engage patients over the years.

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Mary's Fund Award - Applications Open!

The Mary Roberts Scott Fund for Patient Involvement in Research (Mary's Fund) was established in 2016 to honor the memory of founding CERTAIN Patient Advisory Network Patient Partner Mary Roberts Scott, who passed away unexpectedly in July 2016. Mary was a strong proponent of patient involvement in research and healthcare delivery. She strengthened our work and taught us so much through her partnership and friendship. 

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Have You Benefited from PCORI-Funded Research? We Want to Hear About It!

The first projects to be funded by the Patient-Centered Outcomes Research Institute (PCORI) are nearing their completion, and research results are ready for communication to the community of providers and patients who can use the information produced by PCORI-funded studies to make better healthcare decisions. PCORI is invested in making sure that results of the research they fund are made available widely in formats and language that are easily understandable for non-scientists and scientists alike. This goal is being accomplished in many ways that go beyond traditional publication in scientific journals, including peer review of final research reports submitted to PCORI that includes patients and other stakeholders; posting of all PCORI-funded results on ClinicalTrials.gov or another appropriate public database, and development of public summaries of all research results for posting on PCORI’s website.

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New Project: Using Patient-Generated Health Data to Transform Healthcare

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Patient-generated health data includes information that individuals track about their health, well-being and activity. Examples include logging exercise as part of health goals, tracking symptoms after a new treatment is started, or monitoring sleep to determine if changes in habits improve the quality of sleep. Technology advancements with smartphones, health apps, and wearable devices allow efficient capture and reporting of this information at the individual level, yet a clear path doesn’t exist for adoption of this information into healthcare systems to support patient care and population health.

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Does Trustworthiness Matter?

University of Washington School of Public Health PhD student Kate McGlone West is conducting a survey of community members partnering on research projects, as part of her dissertation research entitled, "Exploring Trustworthiness Within Community-Academic Partnerships." Kate's dissertation aims to understand what it means for a researcher to be trustworthy toward their community research partners and how researchers' institutions can remove constraints on researchers that hinder their trustworthiness. 

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Patient Advisory Network Goes to Washington: 2nd Annual PCORI Annual Meeting Recap

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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 CERTAIN Patient Advisory Network and focused my energies at the meeting on learning about and connecting with other PCORI-funded project teams.

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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 us.

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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.

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Remembering Patient Partner Mary Roberts Scott, 1942-2016

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, Mary and Patient Advisory Network Director Danielle Lavallee reflect on Mary's important contributions to the CERTAIN Patient Advisory Network. 

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