Mary’s Fund Award 2018: ECANA Conference

In 2016, the Patient Advisory Network established Mary’s Fund, an annual scholarship award to honor the memory of founding CERTAIN Patient Advisory Network Patient Partner Mary Roberts Scott. In 2018, we were thrilled to grant the Mary’s Fund award to the Endometrial Cancer Action Network for African-Americans (ECANA), to support patient partner involvement in and travel to the first annual ECANA Conference for Community, Education, and Research Training. Continue reading “Mary’s Fund Award 2018: ECANA Conference”

INSPIRE Research Portal Refreshed

Over the past few months, the Patient Advisory Network team has been working on a refresh for the INSPIRE Research Portal, with the support of the University of Washington Institute of Translational Health Sciences (ITHS) Community Engagement Program (grant number UL1 TR002319). We have added nearly 40 resources to support patient-research partnerships and updated the search functions to include more categories to make it easier to find what you are looking for. Visit the INSPIRE Portal today, to find tools and resources to support your research partnerships! The Portal houses resources across a variety of topics, from increasing diversity in research partnerships, to research methods introductions and tutorials, to frameworks for setting up partnerships – and so much more! Continue reading “INSPIRE Research Portal Refreshed”

Mary’s Fund: 2019 Applications Now Open

Copy of Mary's Fund Header

***APPLICATIONS ARE NOW CLOSED.***

Mary’s Fund awards an annual scholarship of up to $500 to support, develop, and deepen patient-researcher partnerships. The 2019 application cycle will close on Friday, September 20, and the award will be announced in  early October. Continue reading “Mary’s Fund: 2019 Applications Now Open”

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. Below is an account of her experience.

Continue reading “CERTAIN Patient Advisor Engagement Experience: Putting Care at the Center Conference”

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.

Continue reading “Research Funded Comparing Treatment Options for Bladder Cancer”

Inform Community Voices: 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 us to be in touch with Community Voices..

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

Diverticulitis is the inflammation or infection of small pouches that form along the walls of the intestines. The vast majority of people with diverticulitis have occasional abdominal pain that improves with oral antibiotics. Complications in diverticulitis can include the need for emergency surgery, which, for a very small portion of patients (approximately 2%) may result in the need for a patient to have a colostomy. A colostomy is an operation in which a piece of the colon is diverted to an opening in the abdominal wall.

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.

Continue reading “Improving Quality of Life for People with Diverticulitis: New Study Funded”