Engagement Opportunities

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.

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.

Calling All e-Patients!
The Coalition for Compassionate Care of California Needs Your Voice!

If you are an engaged patient (e-patient) living with a serious or chronic illness and you also have a well-developed social media presence and an established relationship with a disease-specific advocacy organization, we invite you to take part in an exciting project designed to spread information about palliative care, advance care planning, and person-centered healthcare. Our e-patient participants will be trained, supported and compensated.

Deadline: August 24th, 2018

For more information visit coalitionccc.org or contact Kris Wallach at kwallach@coailtionccc.org

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

Paid Family and Medical Leave and Disability Study

Columbia University and The Arc are doing a study on paid family and medical leave with people affected by disabilities and need your help. For the study, we’d like to interview workers with disabilities and those who provide support to a friend or family member with a disability in California, New Jersey, New York, and North Carolina. We plan to conduct remote, one-on-one interviews by phone, web conference, or email to look at how paid family and medical leave programs can work better for them.


Work in California, New Jersey, New York, or North Carolina or have worked in these states in the past 2 years, AND
Have a disability OR provide support to a friend or a family member with a disability?


call 929-900-5398 or
email paidleavestudy@outlook.com with ‘The Arc’ in the subject line.

Anyone who is eligible and completes an interview will receive a $20 gift card.

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


UPMC Story Booth

The PaTH Clinical Data Research Network wants to know about patients’ experiences with health and illness. By sharing these stories with researchers, we hope to focus research on topics that are of importance to patients and likely to improve health and health care. Using MyPaTH Story Booth patients can record a conversation to share with researchers.

The Experience Innovation Network, All Call

For patients:

The Experience Innovation Network, part of Vocera, would love your insights on important research about how patients and families can influence how health systems are transforming for the future. Have you ever worked with a health system, hospital, or clinic to help bring about change? If so, please take 10-15 minutes to take this survey: https://survey.co1.qualtrics.com/jfe/form/SV_5aKL9OJVZGxyAaF?Source=PFCC

All survey responses will be treated as confidential, and you will be entered into a drawing to win an iPad. This survey will help health system leaders understand what patients and families want and value in system transformation – please lend your voices!

In return for your time, we will share the final report incorporating insights from in-depth interviews with healthcare and patient-family leaders alike. If you have any questions, please don’t hesitate to email Evan LaBranche, elabranche@vocera.com, or call us directly at 415-364-6119. And please feel free to forward this survey to others in your peer group who are interested in the topic.

For hospital and system leaders:

The Experience Innovation Network, part of Vocera, is seeking to uncover and spread leading-edge practices that engage patients and families as true partners in healthcare transformation. Our aim is to build the case for the next wave of patient-family involvement and provide the insights that will enable forward-thinking organizations to improve faster and more effectively. We invite you to take this survey and contribute your voice to this important discussion.


 This survey is for health system leaders of all levels who are responsible for recruiting, capturing, and elevating the patient voice in their organization. The survey will take approximately 15 minutes to complete. All responses are anonymous and data will be used in aggregate. In return for your time, we will share the final report incorporating insights from in-depth interviews with healthcare and patient-family leaders alike. If you have any questions, please don’t hesitate to email Evan LaBranche, elabranche@vocera.com, or call us directly at 415-364-6119. And please feel free to forward this survey to others in your peer group who are interested in the topic.

National IT PFAC

OpenNotes and PFCCpartners are excited to announce a partnership to convene a national IT PFAC. Are you interested in influencing and informing information technology provided and used to care for patients and families? If you have experience with patient portals and are interested in sharing your experiences, please consider applying. For more information click here or complete an application National IT PFAC Application.

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!

North York General Hospital

Do you have 2 minutes to respond with your opinion about what the world’s ten most important unanswered research questions in primary care? If you have ideas or questions about how primary care could be more effective, take the survey!

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!