CERTAIN Patient Advisory Network Goes to Washington: PCORI Annual Meeting

A team from the CERTAIN Patient Advisory Network will be traveling to Washington, DC, October 6-8 for the first annual Patient-Centered Outcomes Research Institute (PCORI) Annual Meeting. The PCORI Annual Meeting will bring together over 1,000 members of the patient-centered outcomes and comparative effectiveness research community for discussions of ongoing work, successes and challenges, and opportunities to continue work together. Patient and family member involvement in research will be a large focus of the meeting, with specific sessions focused on exploring patient-researcher partnerships and each PCORI-funded project represented at the meeting invited to bring along their Patient Partners.

Representatives of the CERTAIN Patient Advisory Network will be attending the meeting to learn from others, grow our network, and share our own experiences. CERTAIN Patient Advisory Network Director Danielle Lavallee will be presenting at Engagement Summit on INSPIRE, a project funded to identify and develop tools and resources that are needed to support patient-researcher partnerships. Patient Partners working as part of the research teams on CERTAIN Patient Advisory Network’s PCORI-funded projects SMARTER and INSPIRE, Mary Scott and Shannon Marsh, will also be attending the meeting to share their experiences and learn from the experiences of others to improve patient-researcher partnerships within CERTAIN.

We will be providing a full report on the PCORI Annual Meeting in our next newsletter and look forward to sharing what we’ve learned. We’ll also be live-tweeting our experiences – follow along on the CERTAIN Twitter page (no Twitter account required to view). Follow along with all conversation around the PCORI Annual Meeting on Twitter and Instagram by following the hashtag #PCORI2015. Select meeting sessions will be broadcast via the internet as well. Learn more and register to view the webcasts on the PCORI website.

Patient Input Vital in New Projects at CERTAIN

As summer vacations are ending and we move into the fall, we are busy at CERTAIN starting up new projects! Read on to learn more about new projects that will be actively engaging patients, caregivers, and others throughout.

Comparison of Outcomes of Drugs and Appendectomy (CODA)
CODA infographicAs mentioned in the March newsletter, feedback from the Patient Advisory Network was vital in the development of a proposal to the Patient-Centered Outcomes Research Institute (PCORI) that would randomize (i.e., a 50% chance, or flip of a coin) participants with appendicitis to their treatment – surgery or antibiotics. The input we received from the Patient Advisory Network helped us support our argument that a study like this needs to be done, and we are pleased to announce that we recently received notice that we will receive the funding for this project! We anticipate that CODA will begin in the next few months. We will be developing a Patient Advisory Group for this project that will meet on a quarterly basis.


Understanding Quality of Care for Patients with Diverticulitis
CERTAIN researchers recently started a new project that is looking at how surgery for diverticulitis affects patients’ lives. Our current work is focused on understanding why doctors and patients make the decision to move to surgery and how diverticulitis in general and surgery for diverticulitis impact patients’ day-to-day lives. We plan to use the findings from this work to inform other patient-centered studies of diverticulitis in the future. We are working on building a Diverticulitis Patient Advisory Group that will partner with us throughout our current project and as we develop future projects. We anticipate that the Diverticulitis Patient Advisory Group will meet twice yearly.

Patient Advisors help researchers develop recruitment processes and materials, think through communication strategies, and think through how researchers can best capture information on patient experiences. If you are interested in learning more about the CODA or Diverticulitis Patient Advisory Groups or the diagnostic testing project, contact Sarah Lawrence at info@becertain.org.

Developing CERTAIN Projects Seeking Patient Partners

The CERTAIN Patient Advisory Network is building a community of individuals who want to inform or partner in the broad range of healthcare research underway and being developed in CERTAIN. We currently have two opportunities that we are exploring and need Patient Partners who are interested in helping us develop patient-centered research studies. If you are interested in getting involved with either of the projects described below, please contact Sarah Lawrence at sarah@becertain.org or (206) 221-7453 to learn more.

The “Every Voice Counts” Study: Previous research and experience tells us that certain groups of people are more likely than others to respond to surveys about their health and quality of life after healthcare interventions like surgery. The voices we do not hear leave a large gap in our knowledge about how well healthcare treatments work and what we can do to provide better healthcare. Researchers suspect that those who don’t respond to such surveys have more complicated problems, don’t have trust in the system, or have less time and fewer resources, but little is actually known about these people. CERTAIN wants to better understand why people don’t participate in these surveys and how we can make sure their voice is heard. Patient Partners on this project would help us determine if patients find this question to be an important one worth pursuing, identify suspected reasons for not responding, and help us create a research study to fix this problem.

The “If I Only Knew….” Study: CERTAIN recently developed a Spine Outcome Prediction Tool that takes into account people’s habits and conditions, such as smoking status, the intensity of pain before surgery, and whether or not someone has had surgery before, to predict how likely it is that spine fusion surgery will improve pain and function. We hope the prediction tool will be an effective tool to inform the decisions patients and their doctors make about spine surgery. CERTAIN wants to understand how tools like this affect the decisions patients make and the outcomes they experience. Does the Spine Outcome Prediction Tool  help make sure that the right people get the right surgery at the right time? Patient Partners on this project would help us determine if patients find this question to be an important one worth pursuing, identify the best way to design our study to ensure that patients are interested in participating, and assist in developing plans to communicate study results to patients.
If you are interested in partnering with us to develop either of these projects, please contact Sarah Lawrence at sarah@becertain.org or (206) 221-7453. Please note that research study development work is typically unpaid work, for all members of a research team, so we are currently unable to compensate you for your work in project development with us. We consider our Patient Partners an integral part of our research team and include funds for their compensation during the project period in any funding proposal submitted.

Would YOU Randomize? CERTAIN Asked – You Answered

For the past 100 years appendectomy, or surgical removal of one’s appendix, has been the primary treatment for appendicitis—in fact, two high-profile celebrities, Rafael Nadal and Anderson Cooper, recently underwent surgeries for appendicitis. But new scientific evidence from Europe is challenging the notion that surgery is the best course of treatment for the disease. Five randomized trials involving over 1000 patients have shown favorable results for using antibiotics to treat appendicitis.

In a blog post last month, CERTAIN posed this question to the public: If you had appendicitis, would you be willing to join a study that would randomize you (a 50% chance, or flip of a coin) to “surgery ” or “antibiotics?”

We received an overwhelming number of responses and a wide range of reasons people chose the way they did (although providing a reason was not required). Here’s what respondents had to say:

Appendectomy vs. Antibiotics – Would YOU Randomize?

Total Responses: 809

Yes: 365 people (45.5%)

No: 332 people (41%)

Unsure: 109 people (13.5%)

CODA infographic

Annual Symposium Sets the Stage for Patient-Researcher Collaborations in 2015

On Monday, November 3rd, the CERTAIN Patient Advisory Network held its second annual symposium, on the University of Washington campus in Seattle. The CERTAIN Patient Advisory Network Annual Symposium brings together patients and researchers interested in working together to shape a new course for collaboration in medical research. The goals of the event were to 1) provide concrete examples of patient-researcher partnerships, 2) discuss ways to improve and expand patient-researcher collaborations within the community, and 3) stimulate and encourage networking between patients and researchers who have common interests.

research_interests-450pxTo facilitate networking and coordinate dedicated time for small group break-out discussions, we asked people to RSVP and include the perspective they primarily represent (i.e., patient, researcher, etc.), areas of health research of interest (see table), and questions they find most compelling regarding patient-researcher collaborations. Fifty-nine people attended the meeting, with the breakdown of attendees being 18 patients, patient advocates or caregivers; 31 researchers or researcher-clinicians; and 10 other healthcare staff (e.g., research project managers, quality improvement staff, community health workers, etc.).

The 2.5 hour-long meeting included an invited panel of researcher and patient partners briefly presenting their experience collaborating on research projects, followed by a panel-audience Q&A session discussing topics including effective ways for patients to identify opportunities for involvement and ways researchers can connect with patient communities; strategies for effective partnership; creating clear roles and expectations for involvement; and tools and resources that improve communication and collaboration. The Symposium ended with dedicated table discussions on a range of topics providing a great forum for people to meet and connect on areas of common interest. As the CERTAIN Patient Advisory Network moves into 2015, we will continue work to identify and fill gaps to facilitate and supporting patient-researcher partnerships in research.

To read more about key discussion points during the meeting, and to learn how this year’s meeting activities will inform the CERTAIN Patient Advisory Network’s work moving forward, read our Symposium summary.

CERTAIN Approved for a $250K Engagement Award

The CERTAIN Patient Advisory Network has received a Eugene Washington PCORI Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to support patient-researcher collaboration in a learning healthcare system.

Danielle Lavallee will lead the engagement project at CERTAIN. The project will focus on bringing together patients, caregivers, clinicians, and other healthcare stakeholders as integral members of the research process. The focus of this 2-year initiative is to build infrastructure that will facilitate training, support, and networking across diverse areas of healthcare for both patients and researchers. Through interviews with researchers and patients key learning objectives and competencies necessary to support collaboration will be identified. The patient-researcher community will prioritize materials necessary to support collaboration, and the project will result in making training materials, support tools, and networking opportunities for patients and researchers participating in patient-centered outcomes research accessible.

“We are very fortunate to have a great community of researchers and patients interested in furthering health research through collaboration. The funding received through the Eugene Washington Engagement Award will allow us to work directly with patients and researchers to identify, develop, and make available tools and resources to support effective engagement,” said Dr. Danielle Lavallee.

The project is part of a portfolio of projects approved for PCORI funding to help develop a skilled community of patients and other stakeholders from across the entire healthcare enterprise and to involve them meaningfully in every aspect of PCORI’s work.

“This project was selected for Engagement Award funding not only for its commitment to engaging patients and other stakeholders, but also for its potential to increase the usefulness and trustworthiness of the information we produce and facilitate its dissemination and uptake,” said Jean Slutsky, PCORI’s Chief Engagement and Dissemination Officer. “We look forward to following the project’s progress and working with CERTAIN to share the results.”

Dr. Lavallee’s project and the other projects approved for funding by the PCORI Engagement Award Program were selected through a highly competitive review process in which applications were assessed for their ability to meet PCORI’s engagement goals and objectives, as well as program criteria. PCORI has awarded a total of $2.9 million to support 14 projects through this program. For more information about PCORI’s funding to support engagement efforts, visit http://www.pcori.org/content/eugene-washington-pcori-engagement-awards/.

Research Partners Spotlight: Karen Wernli, Mary Bush, and Dianne Johnson

Karen Wernli, Mary Bush, and Dianne Johnson provided the keynote presentation at the November 3rd CERTAIN Patient Advisory Network Annual Symposium and are a great example of a successful patient-researcher partnership. Karen received funding from the Patient-Centered Outcomes Research Institute (PCORI) in 2013 for her study entitled, “Comparative Effectiveness of Surveillance Modalities in Breast Cancer Survivors.” This study aims to find out how well MRI works compared with mammography for surveillance in women who have previously had breast cancer. Specifically, the project’s goals are to 1) understand doctors’ and patients’ experiences with surveillance mammography and MRI; 2) provide evidence on which outcomes are more or less likely to occur; and 3) develop patient decision aids to help women and their doctors choose the surveillance method that is right for them. The project team, including Karen Wernli as Principal Investigator and Mary Bush and Dianne Johnson as Patient Partners, are conducting focus groups with patients and interviews with doctors to gain insights into women’s experience with surveillance mammography and MRI, comparing mammography to MRI using data from the Breast Cancer Surveillance Consortium to determine how well each test works, and developing patient decision aids to help women and their doctors make more-informed choices about surveillance. Karen and her team hope this study will help women and their doctors make clearer, better choices about the surveillance method that is right for them.

At the November 3rd meeting, Karen, Mary, and Dianne talked about their experiences developing their partnership, how it has changed in the course of their 18 months together, and what guidance they would offer others hoping to embark on a similar partnership. Two key lessons learned by this team include:

Patient Partners Can Legitimize Researcher Presence
Karen, Mary, and Dianne have travelled across the country conducting focus groups for their project, and Karen thought this was a great strength of their partnership. She noted, “I think one way that they’ve really helped us is to legitimize our presence. While we have other investigators that we’re working with in those regions, the patients don’t necessarily know the investigators that we’re working with, and they may wonder why researchers from Seattle have come all this way to talk to them. [Because of Mary and Dianne,] we can say, “We have these other women that we’ve been talking to, and they trust us. So I hope that you will trust us as well as we go through these conversations together.” Dianne confirmed this, relaying the story of a focus group participant in North Carolina who may not have stayed for the discussion if not for the patients in the room. From Dianne:

“This one woman came in the room, and she was fidgety and anxious, and we [the research team] were kind of all at one end and she went all the way around to the other end of the table and sat down. And I thought, ‘Wow, she’s really nervous!’ So I just went over and sat down next to her. We were chatting, and I said, ‘I’m a cancer patient also, and I’ve been through these focus groups.’ I’m pretty sure she would have just left if she hadn’t had somebody to just talk with, and by the time we got going with the focus group, she was calmed down and had a lot to offer.”

Research is a New Language for Patient Partners
As Patient Partners, Mary and Dianne join regular team meetings and are partners in all aspects of the project, including the data analysis. The broader research team includes biostatisticians, epidemiologists, and clinicians, and when Mary and Dianne joined the team, conversations quickly became too quick and full of acronyms for them to always follow. Mary compared early meetings to a tennis match, with her head swiveling back and forth trying to follow the conversation volleyed. To mitigate these issues, Karen said they did several things, including developing a written dictionary of acronyms and key research terms and touching base after team meetings to clarify discussion points or new concepts that came up during the meeting.

Karen, Mary, and Dianne are among the first long-term patient-researcher partnerships in our network and are a great example of building a healthy and productive partnership with recent recognition in the Wall Street Journal. We look forward to checking back in with them at the end of their project to hear about how their partnership continued to grow and evolve and the high-quality patient-centered work that it produced!