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.

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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!