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!

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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.

 

Have You Benefited from PCORI-Funded Research? We Want to Hear About It!

The first projects to be funded by the Patient-Centered Outcomes Research Institute (PCORI) are nearing their completion, and research results are ready for communication to the community of providers and patients who can use the information produced by PCORI-funded studies to make better healthcare decisions. PCORI is invested in making sure that results of the research they fund are made available widely in formats and language that are easily understandable for non-scientists and scientists alike. This goal is being accomplished in many ways that go beyond traditional publication in scientific journals, including peer review of final research reports submitted to PCORI that includes patients and other stakeholders; posting of all PCORI-funded results on ClinicalTrials.gov or another appropriate public database, and development of public summaries of all research results for posting on PCORI’s website.

To complement this work, it is also important that the impacts its studies are having on patient and provider decision-making are highlighted. To that end, PCORI is hoping to talk with people who have made decisions based on the results of a PCORI-funded comparative effectiveness research (CER) study, as well as people who can help them make the argument that having the evidence a PCORI-funded study can produce is essential in helping them making decisions that they otherwise would have had trouble making due to lack of information or unclear choices on what works best for them.

Have you made decisions that have been informed by the results of a PCORI-funded study? We want to hear your story! Please contact us to tell us more.

For more information on PCORI’s efforts to widely communicate the results of the research it funds, check out their blog post on the subject.

Does Trustworthiness Matter?

Kate McGlone West and her son Corbin
Kate McGlone West and her son Corbin

University of Washington School of Public Health PhD student Kate McGlone West is conducting a survey of community members partnering on research projects, as part of her dissertation research entitled, “Exploring Trustworthiness Within Community-Academic Partnerships.” Kate’s dissertation aims to understand 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.

Kate is interested in ethics of community engagement in research, because she believes that partnering with communities will lead to more respectful research, better science, and improved health outcomes, especially for those experiencing health disparities. Her interest in the topic began over a decade ago, when she worked in a community-based participatory research partnership in Alaska.

If you are currently partnering in a research study as a community, patient, parent, or similar partner, please take the quick and anonymous survey, to help Kate continue her dissertation work!  Those who complete the survey before March 31 can enter a drawing for one of 3 $50 Amazon gift cards.

Take the survey now.

Questions? Prefer to take the survey by paper or over the phone? Contact Kate.

New Project: Using Patient-Generated Health Data to Transform Healthcare

Patient-generated health data includes information that individuals track about their health, well-being and activity. Examples include logging exercise as part of health goals, tracking symptoms after a new treatment is started, or monitoring sleep to determine if changes in habits improve the quality of sleep. Technology advancements with smartphones, health apps, and wearable devices allow efficient capture and reporting of this information at the individual level, yet a clear path doesn’t exist for adoption of this information into healthcare systems to support patient care and population health.

We are excited to share that the CERTAIN Patient Advisory Network has been awarded an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI) to explore this topic! Led by Danielle Lavallee, the project aims to bring together community to understand how patient-generated health data informs patient care; the value patients, clinicians, and others in the healthcare delivery system place on this data; and the challenges these groups face when interpreting and incorporating this data. Ultimately, we hope to shape the research agenda necessary to inform the use of technologies capturing patient-generated health data to improve patient care.

We look forward to getting this work underway and will provide updates as this project evolves!