Engagement Opportunities

engagement opp graphic

Are you interested in partnering with projects, research teams and national organizations to have an impact beyond your local organization?  If so, please take a moment to let us know your interests by completing the PFA Interest Survey.


Good news: Project ACHIEVE, a five-year nationwide best practices study on improving care transitions, is now complete! We’d like to know more about your role in health care and how you would prefer to receive results from the project.

Please take a few minutes to complete this brief questionnaire.

American College of Cardiology

Right Measures for the Right Care of Heart Failure Patients 

November 7th, 2018 in Washington DC, 7:30 am – 3:30 pm.

This will be a one-day multi-stakeholder meeting in Washington DC to foster multidisciplinary discussions designed to engage expert stakeholders to underscore the urgency to examine and define the right quality and performance metrics for patients with heart failure. There will be a stipend available for travel. Serve as a participant at the meeting and provide input and participate in the discussion representing your voice as a patient with heart failure. For more information please contact Severa Chavez schavez@acc.org.

PCORI Peer Reviewers

Need patient reviewers for bariatric surgery, asthma.

The goal of peer review is to ensure that the primary research studies funded by the Patient Centered Outcomes Research Institute (PCORI) are held to the highest standards of scientific integrity, methodological rigor, and usefulness to patients, caregivers, clinicians, and other healthcare stakeholders. By law, all PCORI-funded primary research (i.e., research asking which of two or more approaches is better) must undergo peer review. The peer-review process adds to the credibility, authority, trustworthiness, and relevance of PCORI-funded research findings.

Visit here for more information and to apply.

Surgical Hack-a-Thon

A 48-hour Hackathon. Hackathon is a portmanteau of the words “hack” and “marathon.” A “hack” is a solution to a problem that is developed by intense innovative teamwork in a short amount of time. A hackathon is, therefore, a race to solve challenges against time.

September 29-30, 2018|Irvine, CA

For more information or to register visit here.

A Conversation on Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?

Care coordination is an important approach to addressing the fragmented care that children with medical complexity often encounter. What are optimal care coordination services? How does care coordination intersect with care integration and case management? Learn best practices and how to implement a process that will achieve improved outcomes and value for children with special health care needs and their families. Join us for a lively discussion on the article, Care Coordination for Children with Medical Complexity: Whose Care Is It, Anyway?. The lead author and experts in the field will review the article’s key content and discuss why care coordination is vital to improving the system of care. We suggest attendees read the article prior to the event. Audience Q&A is highly encouraged. Attendees can listen via web or phone. Learn more and register.


  • Dennis Z. Kuo, MD, MHSUniversity at Buffalo
  • Ann S. O’Malley, MD, MPH, Mathematica Policy Research
  • Michele Juda, Parent to Parent of New York State


Christopher Stille, MD, MPHProfessor of Pediatrics and Section Head, General Academic Pediatrics, University of Colorado School of Medicine, Children’s Hospital Colorado

Pediatric Starter Kit: Having the Conversation with Your Seriously Ill Child

The Conversation Project is a national initiative dedicated to helping people talk about their wishes for end-of-life care. The Pediatric Starter Kit is specifically designed to help parents of seriously ill children who want guidance about “having the conversation” with their children.

Starter Kit

The Conversation Project Website: https://theconversationproject.org/starter-kits/#pediatric-starter-kit

What Real Patient Engagement in Research Should Be

Libby Hoy, founder and CEO of Patient Family Centered Care (PFCC) Partners, shares an experience she had as a caregiver communicating with a researcher, and highlights how patient-centered outcomes research is improving these conversations.

Vimeo: https://vimeo.com/268852482
YouTube: https://youtu.be/4z0H4TfMOwo


Discharge Interviews

The Qualitative (StoryTelling) Work Group is looking to interview patients and/or their family members (who were directly involved) who have been discharged from an acute care hospital within the last 90 days to participate in an interview to share their experiences. Results of these interviews will be used to create guidance for successful discharges. Please contact Libby@pfccpartners.com to participate!

National Partnership for Women and Families 

Are you looking for a chance to shape and improve health quality measures at the ground level? This is groundbreaking work – it’s the first time a quality measure developer (CORE) has committed to partnering with patients and families in this way…across their work, and at every stage!

Are you a Medicare Beneficiary with an interest in serving as a Beneficiary Family Advisor?

The Quality Improvement Network- Organization (QIN-QIO) are seeking Regional Representatives to partner in co-designing programs and projects to improve care for all medicare beneficiaries.  To receive an application, please send a request to Stephen@pfccpartners.com  or connect directly with the QIN QIO serving the state you live in.  Learn more about the QIN-QIOs.

Do you live in the District of Columbia? Are you interested in partnering with your Quality Improvement Organization in the state to inform improvement efforts for all medicare beneficiaries served in DC? Please consider applying for the AQIN DC Beneficiary Family Advisory Council. Information and application are attached/below (I’m not sure if you link the documents on the page or post them – whatever way is easiest for the user). Thank you!