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.

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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 westkate@uw.edu.

Research Participation Opportunity: Improving Cancer Care for Black Women

Kemi Doll

University of Washington researcher Kemi Doll is starting a new research study focusing on improving healthcare for black women diagnosed with uterine cancer. Kemi and her team are looking to interview African American women who have been diagnosed with cancer in the lining of the uterus (also called endometrial cancer) about their experience with their cancer symptoms, diagnosis, and healthcare.

Any Black/African American woman over the age of 18 with a current or previous diagnosis of uterine cancer (also known as endometrial cancer) is eligible to participate. If you decide to join this study, you will participate in an interview with a member of the study team for up to 1 hour. Study participants will receive a $50 gift card to thank them for their participation.

If you are interested in participating or learning more, please contact Bridgette Hempstead, the project’s Lead Community Consultant, at (206) 579-4521, or Julianna Alson, Research Coordinator, at (206) 221-6109  or jalson@uw.edu.

Projects Seeking Patient Partners: Patient-Centered Research for Standards of Outcomes in Diagnostic Tests (PROD) Study

A wide variety of tests are used in healthcare, and often give important information to help patients and their healthcare providers make decisions about their care. The PROD study is a project based at the University of Washington that aims to improve our ability to assess both the good, as well as the possibly harmful effects of diagnostic tests. We want to create new guidelines by understanding the outcomes (such as emotional or physical demands) of diagnostic tests that are most important to patients. New guidelines will help health care providers, researchers, and people who produce tests know what information they need to gather or share in order to give patients a better say in their healthcare. Our research is focusing on diagnostic imaging tests. These include common tests like X-rays, ultrasound, CT scans, and MRI scans.
The PROD study is looking for patients who have had at least one diagnostic imaging test, such as an MRI, CT (Cat) scan, Ultrasound, or X-ray. This test could have been done to screen for a disease, or to help make a diagnosis, but preferably requested or organized by your primary care physician. Patients who share their experience as an advisor to the study can help PROD researchers make our research better. The patient stakeholder can help by telling researchers what is important for them to consider when we are interviewing other patients in this study or when the researchers are trying to understand the information they have collected. PROD researchers also want to know how to share this information with patients in the future.

Interested in learning more? Contact us!

CERTAIN Patient Advisors Represent at CUE Summit

This is the excerpt for your very first post.

By Janice Tufte, Yanling Yu, and Mahshid Lotfi

The Consumers United for Evidence-Based Healthcare (CUE) Summit was held at the New York Academy of Medicine, on March 19, 2017. Three of us from the CERTAIN Patient Advisory Network were honored to have had the opportunity to attend this year. Yanling Yu, representing Washington Advocates for Patient Safety, Janice Tufte from Muslims for Evidence Based Healthcare, and Mahshid Lotfi, a Patient Advisor with CERTAIN at the University of Washington, were all actively engaged during the summit, inquiring minds asking pertinent questions to the speakers addressing our concerns.

The main goal of CUE is to strengthen the voice of consumers and provide leadership in healthcare research implementation through guideline development, advisory groups, conferences, and panels. Its mission is to promote the health of populations and the quality of individual health care by empowering consumers, public health policy makers, and health care providers to make informed decisions based on the best current evidence through research, education, and advocacy. The 2017 CUE Summit’s theme was “Leveraging the Power of Patient & Consumer Advocacy to Transform Healthcare.” The Summit was sponsored by Agency for Health Care Research and Quality AHRQ and Patient Centered Outcomes Research Institute PCORI.

There were a number of exceptional speakers on panels and in keynote sessions throughout the day. Below is a brief summary of 3 keynotes that particularly resonated with our group:

The Politics of Consumer Advocacy: the Promise and Pitfalls of Disease Constituencies
Speaker: Vinay Prasad, Oregon Health & Science University

In his talk, Dr. Prasad argued that the voice of patients should be the foremost consideration in medical research and care. This he explained, need proper patient representation to allow for a range of voices, a cross-section of all those affected, voices which will reach some commonality or consensus, and perspective that speaks always and only on behalf of patients. Currently however, the system that represents patients does not consistently achieve all these aims. Key patient groups are missing from the conversation – patients who have died or experienced serious adverse events during clinical trials, those in rural or hard-to-reach areas, and those who don’t typically participate in research in the first place. The speaker emphasized the importance of always guarding patients’ interests, and provided the statistics that around 36% of 104 patients advocacy organizations reported to have at least one drug, device or biotechnology company executive on their governing boards, a situation that may not prove to be in the full interest of patients.

How PCORI “Priority Populations” are Engaging in Research Implementation
Speaker: Sanford Jeames, Huston-Tillotson University

PCORI was established, in part, to assist patients, providers, purchasers, and policy makers in making informed health decisions by advancing the quality and relevance of evidence and disseminating research findings. PCORI aims to assist patients, clinicians, purchasers and policy makers to make informed health decisions through advancing the quality and relevance of evidence, and to disseminate research findings in respect to health outcomes and effectiveness and appropriateness of medical treatments.  PCORI began funding research in 2012 (created in the Affordable Care Act in 2010), to ensure patient-centered outcomes research and comparative effectiveness research. . Since then, PCORI has engaged priority populations on advisory boards, and in workshops, webinars, and other formats to share their views. PCORI will continue gauging the effects of patient and other stakeholder engagement in all points of the research process and look for innovative ways to improve research outcomes through engagement.

If It Works in the UK Will It Work in the US?
Speaker: Sally Crowe, Crowe Associates Ltd

Ms. Crowe gave an overview of the continuum of engagement, which she described in 5 levels:

Level 1: here is what we are doing (informing)
Level 2: what do you think about what we are doing? (consulting)
Level 3: please get involved in what we are doing, and we still support you (engaging)
Level 4: what do you think we should be doing? OK let’s do it together, and we will support you (involving)
Level 5: you do what is important and needed, and we will support you (empowering)

To support patients and the public, one needs to consider training and development, practical support and payment, peer support and networking and may be even emotional and psychological support.  Drawing on lessons learned in the UK, Ms. Crowe offered pearls of wisdom:

  • Work with a diversity of people
  • Honor people’s priorities
  • Check your power as a researcher
  • Incorporate evaluation
  • Invest in building relationships
  • Work in partnership with clear roles and mutual respect
  • Adopt principles and values that underpin your work
  • Acknowledge and manage the policies and the power that play a part in decision making
  • Never lose sight of the purpose
  • Resist certainty
  • Stay in the difficult places
  • Listen to and work with those you disagree with

In answering the question, “are things changing?” the speaker was affirmative, pointing out several changes in the way we think and talk about engagement, an important one being changing the mindset from centrally controlled to citizen-driven.

In addition to these and other keynotes, there were many panel sessions on several critical issues. Every speaker of the day emphasized that improving performance in any field depends on sharing a common goal and cautioned everyone of conflicting goals of stakeholders that may lead to divergent approaches, thereby slowing progress.

Our Seattle-based CERTAIN Patient Advocacy Network contingency were riveted with interest during all of the presentations, where we often had more questions than we hoped could be answered. The subjects raised by a number of speakers at the CUE summit brought to our attention and kept us talking amongst ourselves throughout the day.

If you represent a consumer advocacy organization and are interested in being engaged with evidence-based healthcare opportunities, please visit this page: http://consumersunited.org/opportunities-for-consumer-engagement

Special Thanks to Reva Datar who organized the CUE summit and is our go-to person with our consumer questions year around.  Thanks also goes to CUE for supporting our travels to the summit.

Dear Jessie, I am finally taking your advice.

by Danielle Lavallee

CERTAIN Patient Advisory Network Director Danielle Lavallee introduces a new blog series that focuses on sharing tips, tools, and lessons learned through learning how to engage patients over the years.

“You need a blog.” This advice came from Jessie Gruman, founder of the Center for Advancing Health, when I asked her what peer-reviewed journal to target for a manuscript. Jessie was my first mentor in the world of patient engagement in research. She knew from her own experience as a cancer survivor that patient engagement in healthcare served as the key ingredient for successful health outcomes. A prolific and articulate writer, she focused her work on connecting with people to share actionable tips, tools, and resources for being a prepared and engaged patient. While Jessie believed patient engagement a necessity to improving research, she knew much needed to change in the research culture to reap the benefits – starting with communication.

Jessie’s point in telling me to blog was simple. Academic attempts at communicating to the masses in fact misses the masses. Research jargon, “the publish or perish” thought process, and academic journal paywalls limit, if not eliminate, the ability for patients to access critical information that can support their decision-making about their health. In the present era of smartphones and social media, our ability to communicate and connect are becoming limitless, and the research world is not keeping up.

Jessie offered her advice over 5 years ago and, despite thinking about it often, I am only now taking up her challenge. What took so long? Fear, mostly. In academia, rejection is not uncommon, but it happens through peer review and scripted letters gently informing you that more work is necessary or the fit isn’t right. Blogs require the writer to be succinct and engaging. It also requires a willingness to be vulnerable by putting forth your ideas and experiences. Have you ever read the comments section of a blog? Yikes!

Why now? Because timing is everything. Our resources for research are finite and threatened, yet our need for scientific discovery grows. Now more than ever, researchers need patients and caregivers as partners to improve the quality and efficiency of research and to help spread research results beyond traditional academic circles. Evidence about how partnership improves all aspects of research is growing, but it is still not standard practice. We need to communicate more about our experiences. That means pushing past our academic comfort zones. Through this blog series, I hope to connect with people to share actionable tips, tools, and resources for partnering based on the lessons I have learned along the way. I look forward to inviting discussion on a range of topics. Among them – how my patient partner Mary made me think differently about informed consent, my loathing of the phrase “human subjects,” and that time I realized how research writing can ruin relationships.

Crafting this blog is bittersweet. Jessie lost her fight with cancer in 2014. Revisiting archives of her blog as I prepared to write this reminded me of her intensity and passion for making healthcare better for all. In a tribute to Jessie’s legacy a colleague stated, “She created all of us as her spokesperson. She imbued us with the need and desire to be communicators. Her legacy is actually leaving a part of herself in all of us that we are her voice moving forward.” I am so thankful and honored that Jessie, and so many other patients, caregivers, and family members have shared with me their stories, their time, and their partnership over the years. I am a better researcher because of what they have taught me. I hope this blog will spur discussion and discourse about the journey forward. I look forward to continuing the conversation.

Mary’s Fund Award – Applications Open!

The Mary Roberts Scott Fund for Patient Involvement in Research (Mary’s Fund) was established in 2016 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.

Mary’s work with the Patient Advisory Network stemmed from a desire to ensure future patients have access to better information and evidence. Without the patient voice present, an opportunity is missed to gain an appreciation and understanding of challenges patients and their healthcare providers face when making decisions about treatments – especially when available evidence is limited. Mary’s focus and contributions continue to shape our work.

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. We will be making an annual award of up to $500 to support patients partnering in research and activities that develop and deepen patient-researcher partnerships.

We are excited to announce that applications are open for the inaugural Mary’s Fund Award!

APPLICATION GUIDELINES

Who Can Apply: anyone working in patient-centered outcomes research and engaged in patient involvement in research

Amount of Funding Available: one award of up to $500 will be made each year.

Timing: applications are due July 30, 2017. Notification of award will be made at the Fall 2017 PAN Annual Symposium (details coming soon!).

Eligible Support Opportunities: funds must support activities that develop and deepen patient-researcher partnerships. Supported activities may include, but are not limited to, training or continuing education opportunities for Patient Partner or team training, registration or travel expenses for related conference attendance, support for patient partnership on a project whose budget does not

Reporting Requirement: award recipient will be asked to share back lessons learned or resources acquired as a results of the funded experience. Reports of experience or other tools and resources may be published on the INSPIRE Research Portal.