The quarterly CERTAIN Patient Advisory Network newsletter highlights the work that Patient Advisors are doing within the CERTAIN network and offers updates and developments to our partners and collaborators. You are receiving this newsletter because you are a collaborator of the Patient Advisory Network or attended a Patient Advisory Network event.
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Closing Out 2018, and
Looking Ahead to 2019

Dear Patient Advisory Network members,
It is hard to believe we’re coming to the end of another year – 2018 went by in a flash! Our team has experienced some big changes this year. Sarah and her husband welcomed their first child in January, and Danielle and her family moved across the border to British Columbia, Canada, in August.  Through all of these personal changes, we also managed to accomplish some big things with the Patient Advisory Network!
This year, we began working with the PCORI Engagement Awards team under the PCORI IDIQ mechanism to catalog resources produced by funded engagement awards, as well as make recommendations for how those resources can be made publicly available, to facilitate sharing of knowledge and experience across the community.
In September, we awarded the second annual Mary’s Fund award to the Endometrial Cancer Action Network for African-Americans (ECANA) team. These funds will support patient partner attendance at the first ECANA summit, where attendees will learn how to be peer educators, ambassadors, and advocates in their community and work together with researchers and clinicians to identify research priorities for endometrial cancer among black women.
The new year is shaping up to be an exciting one for the Patient Advisory Network – we will be taking part in two new large pragmatic clinical trials, one in bladder cancer (CISTO) and the other in diverticulitis (COSMID). You can read more about both of these new projects below.
We feel so fortunate to have amazing friends and colleagues as part of our Network to further the work of patient engagement in research. We hope to see you in 2019!
The Patient Advisory Network Team
Danielle Lavallee, Director
Sarah Lawrence, Assistant Director

Improving Quality of Life for People with Diverticulitis: New Study Funded

Current practice in the United States recommends that diverticulitis be treated with a colectomy (removal of a section of the colon) after 2-3 episodes of diverticulitis, even if the diverticulitis responds to antibiotics with no other complications. However, guidelines have recently changed to recommend that the impacts that recurring diverticulitis attacks have on patient quality of life be considered when deciding whether or not to perform a colectomy.   

University of Washington researchers are now asking the question, “for patients whose diverticulitis reduces their quality of life, is elective colectomy more effective than non-surgical management?” The study that the team at the University of Washington has developed is called the Comparison of Surgery and Medicine on the Impact of Diverticulitis Trial, or COSMID, and recently was funded by the Patient-Centered Outcomes Research Institute (PCORI). The COSMID team worked with clinicians and patients nationwide to develop study plans and confirm the important outcomes to report. 

Read more about COSMID, and how patients were involved from the very beginning…

Inform a New Program to Match Partners for Research  

Community Voices is a new program designed to match community-based organizations and academic researchers, to bring health concerns and research ideas from the community to the forefront. This is a collaborative project between the Fred Hutchinson Cancer Research Center and the Institute of Translational Health Sciences at the University of Washington.  

Community Voices is currently recruiting representatives from community-based organizations with interest in engaging with academic researchers in community-driven projects to participate in a focus group focused on gathering information to inform the development of Community Voices. 

The Community Voices program is seeking volunteers to participate in a focus group to assess the acceptability and usability of the Community Voices content, process, tools and web-based platform. Participation will involve participating in one of the two 1-1.5 hour focus groups. As a token of appreciation, you will receive a $35 gift card following the focus group.

Upcoming focus groups include:
  • Wednesday, January 9, 5:30-7pm, in the UW Medicine South Lake Union Building (850 Republican St, Seattle)
  • Friday, January 25, 5:30-7pm, in the UW Medicine South Lake Union Building (850 Republican St, Seattle)
If you are interested in learning more or participating, contact Angelina Kolomiets at (206) 616-6639 or

Research Funded Comparing Treatment Options for Bladder Cancer

A team of researchers, clinicians, patients, and caregivers at the University of Washington, the University of North Carolina, and the Bladder Cancer Advocacy Network have been awarded funding from the Patient-Centered Outcomes Research Institute (PCORI) to compare treatment options for bladder cancer. The study, titled CISTO (Comparison of Intravesical Therapy and Surgery as Treatment Options for Bladder Cancer) compares bladder removal surgery with a treatment that delivers therapeutic agents into the bladder via a catheter for patients with high risk non-muscle invasive bladder cancer.
Read more about CISTO, and how patients and care partners were involved from the very beginning…

CERTAIN Patient Advisor Engagement Experience: Putting Care at the Center Conference

The Patient Advisory Network often writes letters of support or nomination for Patient Partners and Advisors to attend opportunities for further engagement, training, or education in healthcare and research-related areas of interest. We enjoy supporting our partners’ involvement in these activities as well as learning from their experiences. In early December, Patient Advisory Network Executive Steering Committee member Janice Tufte attended the Putting Care at the Center conference, sponsored by the National Center for Complex Health and Social Needs, in Chicago. Janice attended the conference as a Consumer Scholar, after being nominated for attendance by the CERTAIN Patient Advisory Network. 

Read more about Janice Tufte's experience at the Putting Care at the Center conference...

From the Community:

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