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!

Patient Advisory Network Goes to Washington: 2nd Annual PCORI Annual Meeting Recap

The 2nd Annual PCORI Annual Meeting was held in National Harbor, MD, on November 16-19, 2016. This year, I attended as the sole representative of the CERTAIN Patient Advisory Network and focused my energies at the meeting on learning about and connecting with other PCORI-funded project teams.

This year’s meeting was even better than last year’s, with over 1,200 patients, researchers, care partners, community advocates, clinicians, policymakers, and others in attendance. This year’s conference theme was “Changing the Conversation about Health Research” and focused on how PCORI has changed research to be more patient-centered and stakeholder-driven, and how this shift in focus has produced better research.

On November 16, I attended a pre-conference session for PCORI Ambassadors (have you joined the Ambassador Program yet? What are you waiting for?!) that was chock full of great sessions on how ambassadors are currently participating in research, tips and tricks for getting involved in research from a non-researcher perspective, and advice on taking your research advocacy online through social media. The culmination of the day was a wonderful talk by former member of Congress and primary sponsor of the Americans with Disabilities Act when it was introduced into law, Tony Coehlo. Congressman Coehlo made an inspiring and invigorating case for patients being actively involved in research as well as their own healthcare and for PCORI’s value to the United States healthcare system. What a great way to kick off the conference!

The inspiration continued from there. Throughout the two days of the conference, I met so many people who were working hard to involve patients and other stakeholders into their work, or, like us at the CERTAIN Patient Advisory Network, working to create and build community around patient-researcher partnerships in their area.

This year, PCORI made a concerted effort to include options for virtual participation in many of the conference sessions, including the first ever Facebook Live session that allowed for real-time interaction between speakers and virtual participants. The webcast and Facebook Live sessions, as well as the full conference agenda, are available for viewing on the PCORI website, and I encourage you to listen in on some of the great panel discussions that took place throughout the conference!

I left the PCORI Annual Meeting recharged for another great year at the CERTAIN Patient Advisory Network and full of ideas of what we can tackle in 2017. In particular, as Danielle mentioned in her New Year letter, I look forward to incorporating resources, tips, and ideas I heard from others into the building, dissemination, and evaluation of our INSPIRE portal of resources, to be released in February!

A New Year Message from Patient Advisory Network Director Danielle Lavallee

Danielle Lavallee
Danielle Lavallee

Happy New Year! The change in the calendar year serves as a natural point to both reflect back and look forward. 2016 included many highs and lows for the CERTAIN Patient Advisory Network. We spent a good portion of 2016 learning from our network of researchers and patients about successful partnerships and important areas for future focus through our work on INSPIRE. This culminated into a fantastic workshop in July, where we spent 2 days learning and discussing how we can continue to build capacity for successful patient-centered outcomes research and patient-researcher partnerships (read the INSPIRE Workshop report here). In addition, we met a lot of new friends in 2016 – our network grew by 50%! Our thanks to those of you who have spread the word of our group, helped facilitate introductions and connections, and highlighted our work on social media.

While we were making great strides in the work of the Patient Advisory Network, 2016 also brought great loss to our team. Just after the July INSPIRE workshop, we said goodbye to our beloved Mary Roberts Scott, a founding member of the CERTAIN Patient Advisory Network and our close collaborator, partner and friend on all things relating to the Patient Advisory Network. Although she is deeply misse,d her spirit lives on – one of our INSPIRE Steering Committee members asked a question during a recent discussion that has become somewhat of a theme to our work since then – “what would Mary say?” To tangibly honor her memory, we established the Mary R. Scott Memorial Fund to support efforts to expand patient-researcher partnerships. We will soon announce plans for the first award in 2017.

Now to look forward. We have high hopes for the CERTAIN Patient Advisory Network in 2017! We will launch our portal of resources to support patient-researcher partnerships in early February. This is the final product from our INSPIRE project, which formally concludes in February. Be on the lookout for the announcement, as we think this portal will be a valuable tool to all of our work engaging in patient-researcher partnerships, and your feedback will help us with future improvements! We are also planning our 4th Annual CERTAIN Patient Advisory Network meeting for summer 2017. More details will be coming soon! We are currently toying with the theme, “Past, Present and Future” as a way to highlight projects recently concluded, currently underway, and in the developing stages, so that we can once again learn from current efforts and support developing work. Stay tuned!

And as always, we intend to announce new ideas as they start to percolate to see who might be interested. If you have a new idea or want to reach out through to CERTAIN Patient Advisory Network for collaborators, please contact us. We want to help!
In closing, I would like to offer each of you my sincere thanks for your partnership and support in our efforts to build community to advance and improve patient-centered research. It is the collaborations and relationships that make our work so enjoyable. I wish each of you a wonderful year ahead filled with peace, happiness and good health!

In partnership,

Danielle

Remembering Patient Partner Mary Roberts Scott, 1942-2016

The CERTAIN Patient Advisory Network team is honored to collaborate with many wonderful people across a number of projects and initiatives. Our partners engage with CERTAIN researchers in important and substantial ways. Working with motivated and passionate Patient Partners and Advisors not only enriches our research, it expands our research family. It is therefore with deep sadness that we say goodbye to one of our very first Patient Partners, Mary Roberts Scott. Mary passed away suddenly in late July, and her absence is deeply felt by all who knew and loved her. Below, Mary and Patient Advisory Network Director Danielle Lavallee reflect on Mary’s important contributions to the CERTAIN Patient Advisory Network.

Learn more about Mary’s important contributions to the CERTAIN Patient Advisory Network in the September issue of the Patient Advisory Network newsletter.

Scholarships to the PCORI Annual Meeting – Apply by 9/30!

PCORI is offering a limited number of scholarships for individual patients and caregivers, as well as representatives from patient and caregiver organizations, to attend the 2016 Annual Meeting. Scholarships will cover the costs of travel, hotel, registration, as well as an allowance for transportation, baggage costs, and meals not provided during the meeting. Scholarships will cover both applicants and a caregiver if medically necessary.

To read more about this opportunity and apply, visit the PCORI website. The deadline to apply is Friday, September 30, 2016!

Art Workshop for Women with History of Breast Cancer, Seattle, July 23

Seattle area Art Therapy graduate student Annah Edmonds is holding an art workshop for women with a history of breast cancer. The workshop fulfills her degree requirement to design and conduct a research project. The workshop will be held on Saturday, July 23, 10am-4pm. For more information, contact Annah Edmonds at aedmonds@antioch.edu or (206) 769-5956.

artworkshop

Projects Seeking Research Partners: Behavior Health Comparative Effectiveness Research Expertise

The team at the Southern Illinois Healthcare Foundation was recently awarded a Patient Centered Outcomes Research Institute (PCORI) Pipeline to Proposal (P2P).These awards are designed to assist patients and clinicians to research topics about which they are passionate. For the 2nd stage of their project, the Southern Illinois Healthcare Foundation team will:

  • Identify comparators for each of their selected topics and conduct further analysis to advance one of the comparative effectiveness research ideas to a scientifically rigorous project capable of competing for full PCORI research funding.
  • Continue the training and development of an expanded Patient Advisory Council to include an HMO representative and others.

The research team recognizes the need to obtain additional science expertise in CER and behavior health to assist our team with this project and is open to discuss various levels of research consultation/collaboration now and as this research advances into the future.

If you are a behavior health and/or comparative effectiveness research expert interested in this collaboration opportunity, please contact Dale Fiedler, Project Lead at dfiedler@sihf.org or (618) 332-0694.

Follow-Up from the INSPIRE Patient-Centered Outcomes Research Community Workshop

On Monday and Tuesday, July 19 and 19, the CERTAIN Patient Advisory Network held the INSPIRE Patient-Centered Outcomes Research (PCOR) Community Workshop in Seattle. The INSPIRE Workshop was convened to bring together a community of patients and researchers partnering on research throughout the Pacific Northwest and had the objectives of sharing findings from INSPIRE project work, advancing learning about effective patient-researcher partnerships, and discussing what is needed to further support patient-researcher partnerships in PCOR.

The 1.5 day workshop included an exploration of the current landscape for patient-researcher partnerships, an overview of INSPIRE’s goals and work to date, presentation and discussion sessions on key areas of PCOR that we heard were particular needs for support and growth in INSPIRE interviews, and opportunities for networking and sharing successes, challenges, and best practices among the Pacific Northwest PCOR community.

We are currently working on a summary of the workshop (to be released fall 2016) but are currently making available videos of the workshop sessions and the graphic recordings completed by Maketa Wilborn below.

Check out the workshop videos. (Click the menu button in the top left of the video below to toggle between videos.)

Graphic recordings of workshop sessions were produced by Maketa Wilborn. Click images to view full-size. To download and save, right-click and select “save image as.” To request a high-resolution version of an illustration, please contact Sarah Lawrence at lawreso@uw.edu.

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Speaking Opportunity: Sepsis Conference Seeks Patient Speaker to Share Experience

The Harborview Medical Center Sepsis Team is looking for a patient speaker for a 30-45 minute session at the UW Medicine Regional Sepsis Conference on April 1, 2016, at Harborview Medical Center. The patient speaker should be someone who survived severe sepsis and/or septic shock who can tell us about their experience in the hospital and their post-hospitalization recovery. A small stipend will be provided for time and to pay for parking. Interested, please contact Rosemary Grant.