Pediatric Rheumatology Care and Outcomes - PR-COIN

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Pediatric Rheumatology Care and Outcomes Improvement Network

(PR-COIN)

APPLICATION PACKET

We are grateful for the support for this project from: The Arthritis Foundation Anonymous donors American College of Rheumatology The Cincinnati Children’s Hospital Research Foundation The Pediatric Center for Education and Research in Therapeutics at Cincinnati Children’s Hospital Medical Center, the Agency for Healthcare Research and Quality

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APPLICATION CHECKLIST FOR TEAMS

Thank you for your interest in the Pediatric Rheumatology Care and Outcomes Improvement Network (PR COIN). PR-COIN in a “Learning Network” of rheumatology care teams which conduct quality improvement projects to help deliver better clinical care. PR-COIN works as a network to move research findings on new or better treatments more quickly to everyday use.

USA. The PR-COIN Steering Committee is directing this project with quality improvement support and project coordination from the James M. Anderson Center for Health Systems Excellence at Cincinnati Children's Hospital Medical Center (CCHMC) in Cincinnati, Ohio, This application packet is to guide you in understanding our network and to facilitate preliminary activities to complete to become an active PR-COIN team.  Please review this packet and the accompanying PR-COIN Charter that describes our Learning Network, goals, benefits, and requirements.  Submit the following:  Intent to Apply Form (page 5)  Site Application Form (page 6) within one month of submitting your intent including:  Senior Leader Agreement  Core Site Team Information You will be notified via email of your application status.

Upon approval and admittance to PR-COIN, our Support Team will support these remaining required actions:

Submission of human subjects research protection regulatory documents (hereafter referred to as IRB) as required by your local hospital or clinic e.g. Institutional Review Board. To support your IRB application, new teams will receive PR-COINs IRB protocol plus recommended verbiage for parent consent and patient assent forms. Submission of two data sharing legal agreements. PR-COIN partnered with the American College of Rheumatology (ACR) to house team data in their Rheumatology Clinical Registry (RCR): 1) The “Registry Participation Agreement” with ACR must be completed so that your team may submit data. 2) A second legal form, the “Limited Data Use Agreement” with CCHMC, permits the transfer of your team data from the registry (ACR RCR) to the PR-COIN Coordinating Center for analysis.

Data collection cannot begin until both legal agreements and your IRBs approval are finalized so start this process early!

Participation Fee Please be advised PR-COINs annual participation fee is $10,000 covering July – June and is pro rated based upon date of application.

Please direct questions to [email protected]

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PR-COIN Leadership and Support

PR-COIN Steering Committee Members

Esi Morgan DeWitt, MD, MSCE, Cincinnati Children’s Hospital Medical Center, Chair Stacy Ardoin, MD, MSc, Nationwide Children’s Hospital C. April Bingham, MD, Penn State Milton S Hershey Children's Hospital Beth Gottlieb, MD, MSc, Steven & Alexandra Cohen Children’s Medical Center of New York Ronald Laxer, MDCM, FRCPC, Hospital for Sick Children, Toronto, Canada Laura Noonan, MD Levine Children’s Hospital Charlotte NC

PR-COIN Coordinating Center and Support Team

Based at the James M. Anderson Center for Health Systems Excellence at Cincinnati Children’s Hospital Medical Center Peter Margolis, MD, PhD Improvement Advisor Esi Morgan DeWitt, MD, MSCE Quality Improvement Leader Nancy Griffin, BSN, MPA, CPHQ Quality Improvement Consultant Anne Paul, MBA,MA Project Manager Jesse Pratt, MS Data Analyst Jason Stock, BS Data Manager Lindsey Berherger, MHA Project Specialist

PR-COIN Contact Information

[email protected]

www.pr-coin.org Fax 513-636-0171 Attention: PR-COIN

We are glad you are joining us! Please contact us anytime at [email protected]

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Pediatric Rheumatology Care and Outcomes Improvement Network INTENT TO APPLY

Please complete this brief Intent to Apply Form and email to [email protected]

or fax to 513-636-0171 Attn PR-COIN

Our site is planning to participate in the PR-COIN Learning Network

Organization Name: ______________________________________________ Date: __________________ Key Contact Name: _______________________________________________________________________ Title: ___________________________________________________________________________________ Address: ________________________________________________________________________________ City: _________________________________ State: __________________ Zip/Postal Code: __________ Phone: __________________________________ Fax: __________________________________________ Email: _________________________________________________________________________________

By submitting this intent to apply, we agree to submit the full application within one month.

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Pediatric Rheumatology Care and Outcomes Improvement Network SITE APPLICATION

Interested sites should please complete the information below and return your completed application to [email protected]

or via fax to 513-636-0171, Attention: PR-COIN Our site is applying to participate in the PR-COIN Learning Network 2.

3.

Site Name: ____________________________________________________________________ Site Address: __________________________________________________________________ Name of person completing this questionnaire: _____________________________________ Title: _________________________________________________________________________ Email: ________________________________________________________________________ Phone number: _____________________________

1.

Briefly describe the aspects of your hospital/clinic/organization that relate to care of the child with juvenile idiopathic arthritis (clinic size, providers (doctors, physician assistant, nurse practitioners, number of nurses) hospital based or outreach clinics, location (specify; urban, rural, suburban), social worker in clinic. Please estimate the number of children with newly diagnosed JIA your site sees each year: Please estimate the number of children with JIA that currently receive care at your site (patient has had an appointment within past year): 4.

At routine clinic appointments, are any of the following data collected: a.

Pain Scores □ Yes □ No b.

HRQOL (health related quality of life) Measure □ Yes □ No (Indicate which one)________________________________________ c.

Physical Function Measure □ Yes □ No (Indicate which one)________________________________________ d.

Physician Global Assessment of Disease Activity □ Yes □ No

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9.

8.

7.

e.

Parent Assessment of Overall Well-being □ Yes □ No 5.

Does your pediatric rheumatology team utilize an electronic health record (EHR)? Please describe (name/vendor, how long have you been using this EHR). a.

b.

If not currently on an EHR, any plans to adopt an EHR in future? Vendor selected? If currently on an EHR, any plans to switch vendors? 6.

Does your pediatric rheumatology team utilize a physical therapist and/or occupational therapist as part of your outpatient clinical team on a regular basis? Please describe resources available to you for rehabilitation support. Briefly describe any experience that you or others have in initiating successful improvement activities, participating in a learning network or any experience with measurement of quality outcomes. In what topic area(s)? Do you have quality improvement support within the unit structure or from the hospital? Examples of this support would be: data collection, team facilitation, meeting documentation and planning for improvement activities aimed at helping you accomplish your goals. Briefly describe what your organization wants to accomplish as a participant in PR-COIN: Please add any additional information about your setting that may be relevant to this project.

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Site Core Team

A site core team typically consists of a physician or nurse practitioner lead, a member of the ancillary nursing staff, administrative or clerical staff members, and others as meets your needs.

Team Member 1 – Key Contact

The Key Contact serves as a liaison to disseminate information between your team and PR-COIN, and can coordinate day-to-day activities of the project including regular practice improvement team meetings, managing improvement responsibilities and ensuring reports and/or data are collected and reported. Name: ______________________________________________________________________________ Title: _______________________________________________________________________________ Direct Phone: _________________________________ Direct Fax: ____________________________ Email: ______________________________________________________________________________

Team Member 2

Name: ______________________________________________________________________________ Title: _______________________________________________________________________________ Direct Phone: _________________________________ Direct Fax: ____________________________ Email: ______________________________________________________________________________

Team Member 3

Name: ______________________________________________________________________________ Title: _______________________________________________________________________________ Direct Phone: _________________________________ Direct Fax: ____________________________ Email: ______________________________________________________________________________

Team Member 4 (optional)

Name: ______________________________________________________________________________ Title: _______________________________________________________________________________ Direct Phone: _________________________________ Direct Fax: ____________________________ Email: ______________________________________________________________________________

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SENIOR LEADER/ADMINISTRATOR AGREEMENT

The Senior Leader should be someone outside the improvement team who has administrative oversight for the clinical area and can support the improvement team

in this endeavor, including removing barriers to improvement.

Name: ___________________________________________________________________________________ Title: ____________________________________________________________________________________ Organization: ______________________________________________________________________________ Direct Phone: _______________________________ Direct Fax: ___________________________________ Email: ___________________________________________________________________________________ Our practice wishes to apply for participation in PR-COIN, the Pediatric Rheumatology Care and Improvement Outcomes Network. As the Senior Leader, I fully understand the project’s objectives and expectations and pledge to support our team in their data collection and improvement work by addressing barriers and resources necessary to achieve PR-COIN improvement goals. Furthermore I agree that our center will remit the $10,000 participation fee annually. _______________________________________________________________ Senior Leader Signature This signature page must be received with your application in order for your application to be considered. Please fax to (513) 636-0171 Attention: PR-COIN or email to [email protected]

.

The Pediatric Rheumatology Care and Outcomes Improvement Network Project team looks forward to working with you!

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