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.”

2017 PCORI Annual Meeting: Delivering Results, Informing Choices

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.

A snapshot of the INSPIRE poster presented at the 2017 PCORI Annual Meeting
INSPIRE Poster Presented at 2017 PCORI Annual Meeting

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.

Notes from the PCOR Field: Is it Still Patient-Centered When We Say Human Subjects?

As we’ve engaged in research partnerships over the past few years, our team has learned many lessons along the way. We’ve launched this new blog series, Notes from the PCOR Field, that focuses on how partnerships with patients, caregivers, family members, and other stakeholders have changed the way we think about and conduct research. Our second post is from Patient Advisory Network Director Danielle Lavallee on the use of the term “human subjects” to describe people who participate in research studies.

Words matter. This is one of many lessons I have learned through patient-centered outcomes research. The common challenge faced is the jargon used in research. The terms used by researchers are often technical and not self-descriptive. Acronyms, ever abundant, are even worse. On occasion, however, a term or phrase comes up that, in the spirit of patient-centricity, borders on offensive. For me, that term is human subject.

In research, a human subject is defined as “a living individual about whom an investigator conducting research obtains (1) data through intervention or interaction with the individual, or (2) identifiable private information about whom includes a subject’s opinion on a given topic.” (source: US Department of Health and Human Services) Interestingly, it is most often referenced in the context of informed consent for research participation.

I find the term subject falls short as we push towards patient-centered research. As defined, the term “subject” indicates “a person or thing that is being discussed or described; a person or thing that is being dealt with in a particular way.” Placing person and thing in the same context, in my opinion, dehumanizes the person participating in the research process. It is a stark contrast to the true partnership that we strive for in patient-centered research.

The premise of patient-centered outcomes research (PCOR) is to “help people and their care partners communicate and make informed health care decisions, allowing their voices to be heard and valued in assessing the relevant health care options. PCOR promotes partnership with patients and caregivers throughout the research process to ensure that what researchers seek to study is important and informative to people grappling with often difficult and complex decisions about health.” (source: Patient-Centered Outcomes Research Institute)

It is contrary to the mission of PCOR then to view the focus of our research as merely a subject or thing rather than as a person with interests, preferences, and needs in healthcare. Humanizing our definition of who participates in research is critical. In doing so, we shift focus from what we think is interesting to research to what is important to improve patient care; we think not only about what we can measure, but what is meaningful to measure; we strive for transparency in our work; and we seek effective mechanisms to disseminate our findings to transform patient care.

But most importantly, we recognize that research is only possible with the participation of each individual who contributes time, data, experience, tissue, blood, etc., to help us all learn and advance healthcare.

At CERTAIN, we’re working to change our terminology. The term we use for people who agree to participate in our research studies is study participant – a simple but important change. Although perhaps not a perfect term, we vastly prefer it to research or study subject, as the term study participant acknowledges the willingness to contribute and gives people more agency than referring to them merely as subjects.

What do you think about the term human subjects? What other research terms do you feel need updating? We would love to hear from you in the comments below!

Do you have a lesson you’ve learned, a challenge you’ve overcome, or simply thoughts on PCOR partnerships you would like to share for a future Notes from the PCOR Field post? We would love to feature you! Contact Sarah Lawrence to discuss further.

Welcoming 2018 at the CERTAIN Patient Advisory Network

Screenshot of INSPIRE Research Portal homepage
INSPIRE Research Portal

Wow! A blink and already it is a New Year! 2017 was another busy year for the CERTAIN Patient Advisory Network. In May, we launched This web portal, developed as part of our PCORI funded project, provides access to publically available resources and tools that support patient-researcher collaborations. Over 1,000 people have visited the site since May – we are excited to see it gain traction and grow among the community!

In June, we joined forces with the University of Washington Institute for Translational Health Sciences (ITHS), one of 60 Clinical and Translational Science Award sites funded by the NIH. The ITHS promotes the translation of scientific discovery to practice by fostering innovative and community engaged research. This collaboration will allow the CERTAIN Patient Advisory Network to support regional efforts to build patient-researcher partnerships through training and networking.

Finally, we announced our first recipient of the Mary’s Fund Award, Patient Advisor Brian Do this past October. The funds will support Brian’s work on the mPOWEr project. We look forward to following his progress and work in 2018!

We are excited to kick-off 2018 with a CERTAIN Patient Advisor Network Steering Committee meeting to shape our plans for the year ahead. This includes continued work on our PCORI project focused on evidence gaps for incorporating patient-generated health data (think mHealth) into health care delivery. In addition, you will start hearing more about a new project, “The Endometrial Cancer Action Network for African-Americans (ECANA)” led by Dr. Kemi Doll. Kemi is committed to improving the healthcare black women receive. She is building partnerships with amazing organizations including Cierra Sisters; Color of Teal, Inc.; and the Society of Gynecologic Oncology to create a sustainable platform and framework for patient-centered outcomes research responsive to the needs of African-American women. I am inspired by this work – ensuring all voices are represented in research is critical, and efforts such as this will pave the way.

So much to be excited for in 2018!

Danielle Lavallee
Danielle Lavallee
Director, CERTAIN Patient Advisory Network

Mary’s Fund Inaugural Award Recipient: Brian Do

Mary’s Fund was established 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. To honor Mary, a memorial fund was established within the Patient Advisory Network’s administrative home in the Department of Surgery at University of Washington. The goal of Mary’s Fund is to provide financial support for patient partnership in research. This year, we offered one award of $500 that would go to support patient involvement in research, which could include funds to support travel, training, or time spent working on research activities.

Brian Do, 2017 Mary’s Fund Award Recipient

The Patient Advisory Network Steering Committee received and reviewed 4 applications for the 2017 Mary’s Fund award. We are happy to announce that Brian Do, Patient Partner to the University of Washington mPOWEr initiative was selected as the first Mary’s Fund award recipient! mPOWEr is a mobile app for tracking symptoms of infection before and after surgery by allowing for easy and secure communication between the patient and the surgical team to minimize hospitalizations for infection and increase infection surveillance. Brian began working with the mPOWEr team nearly 2 years ago, after he was approached by an mPOWEr team member while recovering in the hospital from his own surgery. He used an early version of the mPOWEr app and saw an immediate connection in the work of mPOWEr to his own interests as an undergraduate student at the University of Washington studying human-centered design and engineering. Over the past 2 years, Brian has taken an active role on the mPOWEr team, ensuring the app’s design and evolution remains patient-centered and helping the team to evaluate how patients are using mPOWEr and where the app can be improved.

With the award from Mary’s Fund, Brian will be focusing on linking and reorganzing patient education materials that are made available to patients at different clinical sites using mPOWEr. Patient education materials are very important to improving patient understanding of how to use the app as well as how to prepare for their surgery and care for their surgical incisions after surgery to avoid infection. Of this work, Brian says he is excited about the opportunity to work on a real-world project that lets him see human centered design engineering principles that he is studying in the classroom every come to life.

Also as part of his award funding, Brian will be starting a regular blog series, focused on his experience as a patient partner and what he’s learned along the way. We’ll be hosting this blog on the Patient Advisory Network blog, so stay tuned! We’ll include Brian’s post in our Patient Advisory Network newsletters as well.

Research Update: Does Trustworthiness Matter?

In the March 2017 edition of the Patient Advisory Network newsletter, we told you about University of Washington PhD student Kate McGlone West’s research that is exploring 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. A number of you participated, and we asked Kate to give us an update on her work.

In her initial survey, Kate found that 4 of the personal characteristics that she predicted to be important based on her previous work emerged as highly related to community partners perceiving researchers as trustworthy. Those areas were ethical, caring, respectful, and self-aware/vulnerable. Two additional characteristics came out of the survey data as well – putting the community first and being open to the community. Additionally, although the sample size for this first survey was too small to confirm association, it seems that those who live in urban areas tend to put more trust in researchers than those in rural areas. Other characteristics of community partners, such as age, race, gender didn’t show any effect on community partners finding researchers to be trustworthy. The community partners and researchers being the same race also didn’t have any effect on perceived trustworthiness. However, more research is needed to see if these community partner characteristics truly have no effect on perceived trustworthiness.

Kate is working on refining her survey based on these initial findings and will be launching a second round soon. If you are interested in providing input in the second round, reach out to Kate McGlone West at