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!

Tell CERTAIN: Would You Participate in this Research Study?

***UPDATE 12/22/2014. The survey referenced in the original blog post is now closed to responses as we work on developing our study. If you are interested in staying up-to-date on this and other research developments within CERTAIN, sign up for our quarterly newsletter.***

nadalTennis superstar Rafael Nadal recently tried a course of antibiotics rather than having an appendectomy for appendicitis. For the past 100 years, appendectomy, or surgical removal of one’s appendix, has been the primary treatment for appendicitis. Emerging scientific evidence from Europe is challenging the notion that appendectomy is better than treating patients with antibiotics alone. The idea for this came from success treating appendicitis on submarines when access to an operating room was not possible. There have now been 5 randomized trials involving over 1000 patients and the results have been favorable for antibiotics.

Given these studies, American surgeons are starting to ask, “Is it time to change our approach to treating appendicitis?” To figure this out, we need your help.

We are developing a US randomized trial to determine if treatment with antibiotics is as effective as appendectomy, when judged by patients. In randomized studies, a person has a 50% chance (flip of a coin) of being in either treatment arm. For our proposed study, patients would be randomized to 1 of 2 treatment options – Appendectomy or Antibiotics. For this to work, patients need to be willing to participate in the study, and given people’s knowledge and opinions about treatment for appendicitis, we are asking people like you to help us get a sense of willingness to participate if you had appendicitis.

Sometimes a lack of willingness to participate in research is due to a perception that the risks or burdens of participation outweigh the benefit. Here’s what we know about these 2 treatment options. For most people having an appendectomy, the operation lasts 1-2 hours and people return home the next day and are able to resume normal activities within several days. After a follow-up appointment with their surgeon shortly after the procedure, people go back to normal life. Surgical procedures are not without risk. Most patients will experience nausea, discomfort or pain from the incisions. In some cases, patients may experience prolonged hospital stays and infections at the site of incision.

Antibiotics only approaches require patients to be admitted to the hospital and receive 24-48 hours of intravenous (IV) antibiotics. Once symptoms improve, patients return home and continue taking antibiotics for one week. Under the best circumstances, patients will not experience further symptoms again and not require treatment or surgery. Antibiotics alone are not without risks. Patients may experience side effects from antibiotics and prolonged pain or discomfort from symptoms associated with appendicitis. There is also a chance that an individual will develop appendicitis in the future and eventually need surgery within 48 hrs (12-47%)or sometime after (9-35%).

Given what we’ve told you, 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?” Please click here to take our one-question survey.

Would you like to be a patient advisor for this research project? If so, please contact Sarah Lawrence at sarah@becertain.org or (206) 221-7453.

Photo credit: si.com

Save the Date: Patient Voices Annual Symposium

We are pleased to announce the second annual Patient Voices Annual Research Meeting, to be held this year on Monday, November 3, 2:30pm – 5:00pm on the University of Washington Seattle Campus. Join us in bringing together patients and researchers interested in working together to shape a new course for collaboration in medical research. Our meeting goals are 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.

Please be sure to RSVP for the meeting at http://becerta.in/panrsvp! We will be assigning seating during the meeting to facilitate conversation and networking among participants with similar interests, so your RSVP is very important!*

*Invited colleagues and friends are welcome, but please ask them to complete the RSVP survey for themselves as well. Please also complete even if you are unable to attend the meeting – we are interested in everyone’s questions and will be sending a meeting summary after the meeting for those who were unable to attend.

Diverticulitis Patient Advisory Group is forming!

We are in the process of developing a patient advisory group of individuals who have been treated for diverticulitis to inform our efforts to improve the quality of care provided. The purpose of the advisory group is to create a forum where community members can work directly with clinicians and researchers to provide input and insight on the work underway to help ensure that the work we do is relevant to people who suffer from diverticulitis. The Comparative Effectiveness Research Translation Network (CERTAIN) organizes several patient advisory groups, including in vascular disease and low back pain.

As a patient partner, you would work with researchers and clinicians to help ensure that the patient experience is reflected in the work that we are conducting. This may include a variety of activities including sharing your experience as a person living with diverticulitis, helping to develop a survey directed to patients to learn about their experiences with diverticulitis, working with researchers and clinicians to develop measures for quality in diverticulitis care.  Please note that your involvement is not considered research. You will not be considered as a study participant, but you will be a study advisor.

As a patient advisor, the time commitment will include meeting with a team of researchers, clinicians and other patients once a month for an hour long meeting and occasional conference calls to review progress on work. We recognize that people are busy and will work to accommodate schedules to maximize participation. If you are interested in participating, please contact Dr. Val Simianu at (206)616-5536, or divgroup@becertain.org.

Your participation as a patient advisor is voluntary and there is no long term commitment required. Neither your decision about participating nor your input into any discussion will affect your medical care. Information you share with us will be kept confidential, it will not be shared with your doctor, or be released outside the University of Washington in any way that identifies you.

I look forward to your partnership in this project to make patient care better!

Sincerely,

Val Simianu, MD
CERTAIN Diverticulitis Patient Advisory Group
Phone: (206)616-5536
divgroup@becertain.org

David R. Flum, MD, MPH
Department of Surgery
University of Washington
Seattle, WA

Patient Advisor Spotlight: Vicki DiGuilio

Vicki DiGuilio is a CERTAIN Patient Advisor working with Dr. Sara Javid on a project to identify the important issues facing women who undergo mastectomy to treat breast cancer that are not currently captured by existing patient-reported outcomes tools. We asked Vicki to tell us why it was important to her to spend her limited time partnering with CERTAIN on research projects relating to breast cancer. Here are her thoughts, in her own words:

SANYO DIGITAL CAMERAI have worked as a supervisor in survey research on various health projects since 1992. What has always fascinated me is the fact that, at the beginning of each study, both supervisors and researchers always speculate at what respondents will think are the most important topics, and we are ALWAYS dead wrong! The undeniable fact is that people who are actually living with the issue we are studying are by far the best people to direct the researchers in their quest to make life better.

I have been battling breast cancer on and off for 19 years, and in the past, that has only meant a lump removal and the distant nagging worry in the back of my mind as to when or if cancer will crop up again. Then In 2012, I faced a left breast mastectomy and in the aftermath of such drastic surgery I found I had no idea how to get on with my life. I had tubes hanging out of me and no breast! I quit bathing. I hid in my house wearing my husband’s 3X sweatshirts and hunching forward to hide my deformity from both of us. If anyone came over, I retreated to the bedroom until they were gone. I couldn’t even stand to look at myself, let alone be seen by my friends and family. I could barely move my left arm, I couldn’t drive and none of my clothes fit. Every time I looked in the mirror, what I saw scared me. I was no longer the happy big-breasted woman who laughed all the time; instead all I saw was the pale sad face of a stranger.

I made several calls to my surgeon’s office and discovered that they were no better equipped than I was to deal with either my practical issues (e.g., where can I get a prosthetic) or my emotional ones (i.e., I am so ashamed of my body). Shortly thereafter, I received a survey in the mail asking about my surgery. I started filling it out and got mad. Really mad. As a survey researcher, I realized that the questions were so restricting. My answers to such standard questions would never tell the real story of what I was going through nor what was important that they address. I proceeded to type up a letter full of my complaints to CERTAIN Patient Voices, who sent me the survey, and mailed it off with the completed survey. For the first time in 2 weeks, I took a shower and washed my hair. From there, I did a lot of online research to help me navigate issues with my drain still left from the mastectomy and to find store that could help me with a prosthetic breast and other specialized issues.

When CERTAIN Patient Voices received my letter, Danielle Lavallee called me to ask if I would like to be involved in projects that CERTAIN is working on relating to breast cancer. I answered with a resounding YES! In my opinion, women who have been through a mastectomy need to give this research all the support and information possible. My hope is that if we come together and share our experiences with researchers, they will turn that information into valuable tools that translate into high quality post-surgery care for women struggling with this horrible disease in the future. My personal goal is that in sharing my experiences, if I can help just one other woman get through this terrible, life-changing experience, my time will be well spent.

We Want to Hear From You: What Does Your Gut Tell You About Appendicitis?

Appendicitis is a very common condition, impacting almost 1 out of 5 people. Unless you have had your appendix removed, you are at risk for appendicitis. For over 100 years, the primary treatment for appendicitis has been the surgical removal of the appendix, called an appendectomy. In Europe, and more recently the United States, some doctors have started to challenge the notion that appendectomy is needed, instead treating with antibiotics alone. The advantage of a non-surgical approach to treatment is avoiding the risks to patients that come with surgery. However, while non-surgical treatment appears to be safe, people only receiving antibiotics remain at risk for appendicitis in the future. It is not clear if treatment with antibiotics alone is as effective as appendectomy in the long run or which treatment approach is preferred or considered better by patients.

The goal of patient-centered outcomes research (PCOR) is to assess the benefits and harms of treatment options to help inform decision-making, and the treatment of appendicitis is a great example of an area where PCOR is needed.

Given the lack of clear evidence to inform the best treatments for patients with appendicitis, surgeons at CERTAIN hospitals in Washington State are developing a study to answer this question: is treating patients with antibiotics alone as effective as appendectomy? We are looking for input from patients, clinicians, policymakers and others to guide our next steps and hope you will answer a few brief questions!

take_our_survey_button

See how others taking the survey responded.

Patient Advisor Spotlight: Shannon Marsh

MarshShannonNavigator_180Shannon Marsh currently works as an American Cancer Society Patient Navigator at the Swedish Cancer Institute and is a recent partner to the Patient Advisory Network. Shannon has an extensive background in patient advocacy and as a patient advisor in research. In 2003, Shannon quit her practice as an appellate attorney to work at the Fred Hutchinson Cancer Research Center as a research advocate. This decision was prompted after her father received a grim prognosis of esophageal cancer at the age of 58. At that point, Shannon had already experienced her own diagnosis of a rare pediatric ovarian cancer at age 12, watched all the women on her father’s side of the family die from ovarian or breast cancer, and learned she carried the BRCA2 mutation. Her decision to become a patient research advocate was simple, she says, as “being a passive observer was no longer an option.”

To date, Shannon has worked with several cooperative groups, including the Department of Defense’s Congressionally Directed Medical Review Program for Ovarian Cancer Research, the National Cancer Institute’s GI task force, the Pacific Ovarian Cancer Research Consortium, Marsha Rivkin Center for Ovarian Cancer Research, and the Executive Advisory Panel for the Patient Advocates in Research Team (PART) for the SPORE program, and on several research studies at Seattle’s Fred Hutchinson Cancer Research Center and Seattle Cancer Care Alliance.

About her work, Shannon says: “The ultimate goal in becoming a patient advisor in research is to aid in the development and funding of good science and to expedite its delivery from the bench to the bedside. We [patient advisors] do this by providing the patient perspective up front – by asking the questions that a person in the lab might not. It’s no easy task and involves learning a new language, being willing to ask the “stupid” questions, and recognizing the enormous opportunity and responsibility that comes with providing the voice for so many patients who have come before us and/or will follow us.”

Patient Advisor Spotlight: Mary Scott

Mary Scott became involved in the CERTAIN Patient Advisory Network in October 2012. Since starting her work as a Patient Advisor, Mary has actively contributed to CERTAIN. She has attended all of our Patient Advisory Network meetings, contributed to the CERTAIN PAD Study by providing input on study documents aimed at patients, and worked with CERTAIN Patient Voices Project Senior Researcher Dr. Danielle Lavallee on a new funding proposal to the Patient Centered Outcomes Research Institute (PCORI) entitled, “Comparing Engagement Techniques for Incorporating Patient Input in Research Prioritization.” In this project, she helped conceptualize study operations, particularly in providing insight on how to best engage patients to provide input on research priorities. She also assisted in drafting patient materials for the proposal.

Mary’s interest in being involved in the CERTAIN Patient Advisory Network stems from her desire to make a difference in the lives of people. She also harbors a great interest in the medical field and enjoys learning about and contributing to work to advance health. Most significantly, Mary partners with CERTAIN as a way to honor her daughter who recently passed away. Her daughter, an OB-GYN physician, was passionate about her work and active in the research community. In her spare time, Mary serves as the Editor of the Ellensburg, WA, city newsletter, “Town Talk.”

Patient Advisor Spotlight: Sarah Han

shanSarah Han is a CERTAIN Patient Advisor currently working on theMobile Post-operative Wound Evaluator (mPOWEr) project. mPOWEr is a post-discharge wound surveillance mobile health (mHealth) app that encourages patients to engage in their wound management, allows surgical providers to monitor their patients post-discharge, and provides a reliable method of patient-provider communication. Sarah met mPOWEr Principal Investigator Dr. Heather Evans when she was volunteering in the Emergency Room at Harborview Medical Center. Sarah is a recent University of Washington graduate who is interested in pursuing a career as a physician, so she was initially interested in opportunities to volunteer on a research project to gain research experience. However, after talking with Dr. Evans about her ongoing research, Sarah became interested in offering a patient perspective to mPOWEr, due to her previous experience with a surgical site infection after her own surgery two years ago. Sarah began collaborating with the mPOWEr team in the Spring of 2013 and has since been involved with design of the mPOWEr application and writing additional funding applications.

When she first began working with the mPOWEr team, Sarah says that she did not immediately recognize the importance of what she had to offer to the team of highly trained and experienced researchers. But, she says, she quickly learned, “my value is my patient experience! My mere presence focuses the team with a more patient-centered approach and helps to design a tool that patients will actually use. As an advisor, I provide the patient voice and ensure that the issues most important to patients are continually represented.”

Sarah believes that patient involvement in research is extremely important. She says, “after getting involved as a Patient Advisor on mPOWEr, it occurred to me that as a patient, our stake in research isn’t in the professional capacity, but it affects us in a very personal way. Patients intimately feel the consequences of disease and illness, and research influences treatment. We can help address gaps in the healthcare system and inform the most useful interventions, yet we are a vastly underutilized resource. I truly believe that patients should not only be on the receiving end of healthcare, but also be contributors to medical research, policy-making, and practice.”

Sarah plans to use her experience with mPOWEr to continue to champion patient involvement in research as well as their own healthcare management. In the fall of 2014, Sarah will attend Stanford MedicineX, a conference that explores how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. She received an ePatient Scholarship to attend MedicineX, which will afford her the opportunity to connect with other patients partnering with researchers on healthcare technology projects as well as to present her work as a Patient Advisor so that others can learn from her experiences.