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Standards of Engagement

Be Focused on PCOR & Patient Engagement

The organization must be committed to:

  • Applicability (applying results) - meaningful consequences for patient quality of life and community health
  • A focus on impact that we can measure
  • Honoring commitments - “Doing what we say we will do”
  • Ensuring clear expectations amongst stakeholders (including organizational leadership, personnel, and patients) and empowered, autonomous participation

What needs to be in place for the organization in general:

  • Effective communication - internally and with patients/partners that is transparent and respectful
  • Decision making process across organizational levels that is understood by all parties and represents a mutual effort

What needs to be in place when considering a particular research project:

  • Adequate time and resources devoted to project (for both the organization and patients)
  • Everyone (leadership and staff) understands the commitment to the funder and partners
  • Discipline ourselves to ask the question “How does this strengthen patient empowerment, relationship with organizations, and treatment outcomes”
Be Grounded in Cultural Competence

The organization must be committed to:

  • Adequate number and diverse Latino patient representation (not just token)
  • Inclusion of Latino patients’ perspective and insights throughout the partnership (not just attendance)

What needs to be in place for the organization in general:

  • Systematic stakeholder discussion - a system to bring together community, patients, providers and researchers at a given time to determine research questions, involvement, agenda, etc.
  • Ongoing collaborative partnerships - in harmony with mission and goals of person or organization - not just a one-time project
  • A common understanding of what PCOR is - through education & training - both for the organization and for patients, partner organizations & researchers

What needs to be in place when considering a particular research project:

  • Meaningful representation of Latino patients and perspectives in the discussion
  • Patient influence - understand how Latino patient participation influences research study design and results
Include a Plan for Sustainability of Efforts

The organization must be committed to:

  • An ongoing relationship between all involved partners
  • Developing infrastructure for facilitating ongoing research

What needs to be in place for the organization in general:

  • Realistic consideration of costs - both direct and indirect
  • Commitment to long term engagement with a trusted partner
  • Protected time and space for research activities

What needs to be in place when considering a particular research project:

  • Alignment with organization goals - clear understanding of how the project fits within larger organizational goals and works toward them in broader timeline
  • Defined plan for transitioning from project to next phase of partnership toward ongoing goals
Show How Knowledge Is Improved

The organization must be committed to:

  • Applicability (applying results) - meaningful consequences for patient quality of life and community health
  • Accountability and transparency with research process
  • Improved “translation” - sharing findings in a way that allows them to affect the world around us

What needs to be in place for the organization in general:

  • A plan for giving ongoing research updates to everyone involved and applying feedback received

What needs to be in place when considering a particular research project:

  • The development of the proposal and implementation of the project includes insights from patients and stakeholders
  • There is a plan for dissemination and implementation

FACILITIES AND RESOURCES

Sample Description from a University Partner

TOOLKIT CONTEXT:
Step 3: Seeking Funding & Forming the Application

Universities are accustomed to considering the Facilities and Resources they bring to any

project partnership, and they account for these in their budgets. By considering the Facilities and Resources that all project partners bring during the development of the Project Summary, a more transparent understanding of all partner resources available / required can be achieved when it’s time to develop a comprehensive budget for the project. Doing so ensures that you are

adequately compensated as the CBHOSL for all the assets you will bring to the project.

Name Facilities and Resources

Research Staff

The Center’s most valuable resources are its staff and associates. The staff of over 220 is composed of faculty-level research fellows, research assistants, programmers and data entry personnel, librarians, business office and other support staff, as well as graduate assistants, visiting international research fellows, and pre- and post-doctoral fellows.

Also affiliated with the Center are over 200 research fellows composed of faculty from more that 20 disciplines at the University of xxx, xxx University, xxx University, and several private and public agencies throughout state, and the United States.

Business, Finance and Research Administration

xxx Center’s Business Office is committed to supporting the research mission of the Center. Our goal is to provide the highest level of customer service and research administration expertise. The Business Office provide support to researchers with contract and grant applications, financial management, human resources, and payroll. This office averages more than 120 proposal submissions each year. The Center’s Business Office consists of 9 permanent employees that provide guidance and instruction with research administration activities: pre- and post-award; generating data for completing agency forms and reports; proposal packaging and submission; establishing and managing financial accounts; human resources: job creation, recruitment, retention; and payroll. The Deputy Director has over 41 years’ experience in research administration, financial management and human resources at xxx and 20 years of this with xxx Center. In addition each year the Deputy Director recruits 8-10 students funded primarily by the Federal Government’s Federal Work-Study Programs. This allows students to obtain hands-on experience in the areas of accounting, finance, and research administration.

The office works in close collaboration with the University’s Office of Sponsored Research (OSR) with regard to all facets of pre-award and post-award administration and is a liaison between number of university departments and other campus offices for the research administration, financial management and human resources processes.

Contract and grant administrators are assigned to specific Center investigators, and do not rotate. In this way, there is clear and consistent delegation of responsibilities which allows investigators to focus on their research rather than on administrative concerns.

Computing Capabilities

The Center maintains a state-of-the-art computing services and support infrastructure. An internal information systems staff provides daily administration and technical support for more than 200 high-end personal computers and a cluster of servers. All personal computers are connected to a 100 megabit, secure switched network for shared file space and shared print services. File and print services are provided via a cluster of servers with high availability disk arrays and twice daily backups: one on-site and one off-site. The Center has dedicated research computing servers for handling analytic programming on large-scale research datasets that may contain sensitive health information. Access to these servers is limited to a few specific programmers authorized by the Center’s senior management. Two levels of web services are provided to address data security concerns. One web server is designed for static web pages and basic information dissemination. The other has enhanced security layers for enterprise-level database connectivity, web programming, and research data collection. The Xxx Center web services are provided using Linux servers and a collection of Open Source web tools that allow dynamic, interactive web pages with relational database connectivity. All Xxx Center production servers are physically located in a Tier II Data Center providing backup power sources, climate control, fire protection, and 24x7 surveillance.

The Center maintains a full complement of sophisticated software applications for statistical analysis, project management, spatial analysis, mapping, web publishing, graphics production, and data management. The Center augments its information services by partnering with the University’s information technology group for larger-scale file space services, enterprise-level software, and high-end computing power. The Center’s sub-network is connected to the University’s network via a dedicated high-speed, fiber optic connection.

The Center endeavors to preserve the privacy, confidentiality, and security of sensitive information that may be part of research datasets. Sensitive information is handled following the guidelines in the Federal Information Security Management Act of 2002 (FISMA). Protected Health Information (PHI) is handled according to appropriate Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy and Security regulations. Research staff who work with sensitive data are required to complete appropriate HIPAA training with periodic updates, complete Xxx Center internal training, comply with thexxx IT Security Policies, and agree to the provisions of the Xxx Center’s Rules of Behavior and Sanction Policy. The Xxx Center strives to implement reasonable security controls guided by FISMA, HIPAA, and OMB Circular A-130, Appendix III.

All personal computers are located in lockable offices. Laptop computers that access or contain sensitive data are configured with PGP Whole Disk Encryption to protect data at rest. The Tier II Data Center is accessible only to authorized system administrators. Original data tapes and backup tapes are stored in locked offices with copies secured in at least one other off-site location. All computer printouts resulting from analysis of data will be stored in locked offices and shredded to dispose. All employees of the Center receive training in data confidentiality and are required to sign a confidentiality agreement prior to beginning any research.

Beyond these primary computing resources, the Center, as part of its multidisciplinary focus, maintains numerous collaborative relationships with several University Schools and Departments through which its computing capability is enhanced. The available services include:

  • redundant, enterprise-scale Oracle servers with client connectivity software and complete backup and disaster recovery.
  • the availability of the Geographic Information Systems (GIS) maintained by the Cartography Lab in the Department of Geography;
  • access to GIS mapping files and spatial analysis files maintained by the University’s GIS data librarian; and,

1. the extensive collection of secondary data maintained by the xxx in Social Science, a campus-wide resource that is designated a depository for all National Center for Health Statistics datasets and whose data collection includes full US Census Depository materials including intercensal data sets.

The Center employs a web specialist who enables the Center to maintain a high-profile of its research activities on the web, as well as give researchers the capability to offer instant access to time-sensitive publications via PDF format.

Data Management and Systems Development

All projects have access to the Center’s pool of professional programmers. Programmers are assigned to specific projects and become integral members of the research teams. They conduct project-related data management, data editing, statistical analyses, and systems development in both centralized and local computing environments, depending upon the size of the datasets involved, security required, and interconnectivity needed. Within the Center, programmers have available the microcomputer versions of SAS, SPSS, Stata, and Lisrel. SUDAAN, Limdep, S-Plus and numerous other software packages are available through the centralized computing facility. Xxx Center programmers are experienced in large-scale dataset management, analytic programming, and file manipulation, including file translation, file conversion, and preparing data for transport over multiple-platform computing environments and across diverse operating systems. Xxx Center programmers are familiar with a wide variety of secondary data, including Census, Vital Records, National Health Survey, Hospital Discharge, MarketScan, SEER, and Medicaid and Medicare claims data.

In addition to analytical programming, the Xxx Center has a team of web/database programmers who work directly with research teams to design and develop database systems for data collection and research project event/participant tracking. These system leverage an internally-

developed infrastructure and programming framework for rapid development and secure implementation of research data systems. Database systems are typically developed using MySQL or Oracle with a variety of front-end interfaces (Web, Microsoft Access, SAS, etc.).

The Xxx Center has a data entry service dedicated to high-quality data transcription. Coded questionnaires/instruments are keyed using Entrypoint and SPSS Data Builder software. These programs allow maximum flexibility in the construction of specific data entry formats, provide excellent prompting and error messages to the operator, perform sophisticated edit-checks and double-key verification at entry, and permits reformatting of and reporting on the data after data entry is complete. All data processed by data entry are both keyed and verified.

Library Services

Two full-time librarians oversee the Center’s library holdings, conduct bibliographic searches from electronic sources, and consult with researchers about information retrieval, storage, and dissemination. The librarians provide basic searches to inform planning for projects and papers, and work with staff to build project databases. Medline, the National Library of Medicine’s on- line indexing and abstracting service, has a current additions file that is searched monthly for the newest articles in designated areas of interest. These abstracts are distributed to requesting staff members. The Xxx Center has access to all National Library of Medicine (NLM) databases, including Medline. NLM also houses HSRProj, a health services research-focused database compiled at the Xxx Center. The Center has access to the comprehensive biomedical and public health database repository service offered by the Health Sciences Library, and the electronic database access service offered by xxx Library. Using a computer in the Xxx Center, business and government databases can be searched at no cost. Search results can be captured and made available to requesting clients in a matter of minutes. Utilization of these resources permits real- time access to databases and libraries worldwide. Additionally, the librarians assist and instruct in the use of three bibliographic management tools in use at the Xxx Center: EndNote, RefWorks, and ProCite.

Space and Facilities

The Xxx Center is located in its own 35,000 square foot building less than a mile from the center of the xxx campus. For data security reasons, the building remains locked at all times and guests are viewed and questioned by the Xxx Center receptionist before they can gain access to the building. Within the Center there are five conference rooms and three kitchens that enable the Center to handle a wide variety of meetings and seminars. An in-house library houses pertinent reference materials including basic statistical and demographic reference works; state, AMA, and

AHA guides; directories; and the Sage series on research.

 

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