Mary’s Fund: 2019 Applications Now Open

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***APPLICATIONS ARE NOW CLOSED.***

Applications are now open for the Mary’s Fund 2019 cycle! 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.

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Who does Mary’s Fund support?

Anyone participating in a patient-researcher partnership can apply for the Mary’s Fund award. Preference will be given to applications initiated by those representing the patient perspective, as we want to encourage patient partners to take leadership roles on their partnership teams.

What activities does Mary’s Fund support?

Funds are meant to support activities that are not otherwise funded that will enhance and deepen partnerships. Examples of potential awards include, but are certainly not limited to, supporting conference attendance and presentation of project work; providing compensation for patient/community partners in between funded research projects; obtaining additional training or education for research partners to increase research knowledge, participate in trust-building activities among partners, or develop knowledge and skills related to a research partnership.

We encourage you to be creative in thinking about what Mary’s Fund could support for your team! Mary was passionate about ensuring that research partnerships were mutually beneficial and satisfying, in addition to contributing to making research better, and we want this award to help teams work together.

What are the reporting requirements of the award?

We want Mary’s Fund to contribute to patient-researcher partnerships as a whole and to benefit the greater patient-centered outcomes research community. We ask that Mary’s Fund awardees identify some way in which they can share back lessons learned or other information or experiences obtained as a result of the Mary’s Fund award. This could include, but is not limited to, sharing tools and resources developed for inclusion on the Inspire Research Portal, writing blog posts detailing experiences and lessons learned, or sharing recaps of conference/workshop participation in the quarterly Patient Advisory Network newsletter. We invite your creative thinking on the best way to share valuable information with the Patient Advisory Network community.

How can I support Mary’s Fund, to continue this partnership support opportunity?

Donations are gratefully accepted to Mary’s Fund, to help us continue to honor the memory of Mary Roberts Scott. All donations are used to make awards to support and deepen patient-researcher partnerships. Mary’s Fund is administered by the University of Washington Surgical Outcomes Research Center. To contribute to Mary’s Fund, contact Sarah Lawrence.

Who was Mary Scott?

Mary ScottMary 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. She strengthened our work and taught us so much through her partnership and friendship. In her memory, Mary’s Fund was established to support and deepen patient-researcher partnerships.

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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”

Closing out 2018; 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 great things with the Patient Advisory Network!

Continue reading “Closing out 2018; looking ahead to 2019”

Researcher Spotlight: Kemi Doll – Improving Gynecologic Cancer Care for African-American Women

How do black women experience gynecologic cancer-related healthcare, and how can their experiences be improved? What societal factors exist that contribute to different (and often worse) gynecologic cancer outcomes for black women? These are questions that Dr. Kemi Doll, a gynecologic oncologist at the University of Washington, seeks to explore and understand through her research. Kemi is conducting multiple projects and initiatives focused on improving healthcare for black women diagnosed with gynecologic cancers. We featured one of those projects in the September 2017 Patient Advisory Network newsletter, which is looking to interview African American women with cancer in the lining of the uterus (also known as endometrial cancer) about their experience with their cancer symptoms, diagnosis, and healthcare. Recently, Kemi and her team of community organization partners received funding from PCORI to build the Endometrial Cancer Action Network for African-Americans (ECANA). Over the next two years, ECANA will create space for African-American women affected by endometrial cancer for empowerment and health – through knowledge, community-building, and action. This community-focused aspect of her work is necessary, Kemi says, because “The community of women knows their truth, knows their history. They can tell us what is going on.” Because of this, she notes, “It is really important to me that this research is not one-sided.”

When asked why she chose to focus on endometrial cancer, Kemi points to the massive racial disparity in outcomes and survival rates among black and white women: “Endometrial cancer is the most common gynecologic cancer; it affects one in 37 women in the US. It’s four times more common than cervical cancer, and yet I don’t think it has the same visibility and public awareness. Most women are diagnosed at an early stage and are treated effectively. There is an over 80 percent 5-year survival rate—hence its reputation as a ‘good cancer.’ But there is a flip side; it also is responsible for one of the largest racial disparities among cancers in the US. The black/white mortality gap in endometrial cancer is worse than breast or colorectal cancers. The burden—the rate of cancer—is about the same for black and white women; however, the rate of dying from it is extremely different. Black women have a 55 percent greater 5-year mortality rate than white women after diagnosis.”

This disparity drives Kemi every day to answer the questions of why black women are dying at much higher rates from endometrial cancer, despite having similar rates of diagnosis as white women. “Black women are dying from a disease we can detect early, we can treat, and most people can survive,” she notes. “We have to ask why that is happening. We know black women have higher rates of ‘high-risk’ histology types, but this does not account for how large the mortality gap is. Recently, there has been a lot of focus on potential molecular or genetic causes, but we cannot blame this solely on biology. It’s also not just related to poverty.”

Kemi’s research is focused on identifying the factors that can be modified (i.e., those not related to genetics or other biological characteristics) that influence this disparity and what can be done to minimize or remove those factors. “Biology is complex; cancer is complex. I would never dismiss that,” she says. “But that is not a reason not to try to narrow the disparities we see in any population by eliminating the non-biological factors. These we can solve. There are very smart people working in biology and genetics and I wish them all the luck. But even if they do find some answers, if we still haven’t removed the disparities resulting from social categories, we won’t make any progress in ensuring that all women have the best chance of survival if diagnosed with this disease.”