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.
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.
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..
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.
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!
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.”
by Janice Tufte, PCORI Ambassador and member of the CERTAIN Patient Advisory Network Steering Committee
The 3rd Annual PCORI Annual Meeting was held in Crystal City, Virginia on October 31 through November 2, 2017. Researchers, clinicians, life science professionals, and patients all came together to hear about results of PCORI-funded research. Freddie White-Johnson, Founder and President of the Fannie Lou Hamer Cancer Foundation, delivered an inspiring, from-the-heart keynote opening address about her moving work with patients who have cancer coming from diverse socioeconomic backgrounds in the Mississippi Delta. The following morning, actor/writer/director Alan Alda, who is also founder of the Alan Alda Center for Communicating Science at Stony Brook University in New York, followed with a humorous yet serious story of how he became more deeply involved in communication science and dissemination of research findings to patients and the general public. Both of these outstanding keynotes can be viewed online at the PCORI Annual Meeting website. PCORI Executive Director Joe Selby’s recap of the Annual Meeting also offers a view of the meeting from PCORI’s perspective, and in particular highlights the remarks of a former member of Congress who initially opposed the creation of PCORI but has become an ardent supporter of the Institute after seeing the impacts of its funded work over the past 7 years.
Breakout and plenary sessions over the course of the meeting focused on topics such as shared decision-making, PCORI’s policy on data sharing, cancer treatment options, healthcare efficiency improvement, outcomes improvement for vulnerable populations, alignment in services for individuals with chronic conditions, patient-centered multiple sclerosis research, the opioid crisis and pain management, dissemination and implementation of research findings, PCORnet, and many more! Many of these sessions were recorded, and I would recommend that you watch any sessions that are of interest to you!
This year’s meeting also included multiple poster sessions, where PCORI-funded project teams had the opportunity to share their work with the PCORI community. CERTAIN Patient Advisory Network Danielle Lavallee was there, sharing about the INSPIRE Research Portal.
The Annual Meeting was preceded by the PCORI Ambassador Pre-Conference session, which hosted an eclectic group of Ambassadors came to learn about PCORI’s goals for the next year, opportunities to get further involved, and to discuss how to further the voice of patient-centeredness in research. Slides from the Ambassadors Pre-Conference session can be viewed here – many of the Ambassadors shared their stories, including me, found on slides 207-212.
PCORI has purposefully developed and nurtured a group of individuals coming from all walks of life, to come together for a common cause, advocating for patient-centeredness in research, and all striving and working towards health research done better, equitable health care delivery, and better health outcomes. I see the PCORI conference as an exceptional opportunity to learn more about patient-centered research, comparative effectiveness research, the latest findings and results, and how and what my Ambassador colleagues are doing. I look forward to attending next year’s meeting! If you are interested in an opportunity to attend the 2018 PCORI Annual Meeting as well, I would encourage you to explore becoming a PCORI Ambassador, as this is a great way to get involved in the PCORI community and to learn about options for attending PCORI events.