PROTEUS — PRACTICE
Governing the System: Chapter 14
In this excerpt (Chapter 14) from the PROTEUS-Practice Guide, you’ll learn how to develop and oversee the standards and policies of your patient-reported outcome (PRO) system.
This webpage contains the entire contents of Chapter 14. You can also download the PROTEUS-Practice Guide by clicking here.
Key Points
- Governance provides oversight for the development and management of a patient-reported outcome (PRO) system, including developing and enforcing standards and policies to guide decision-making about the PRO system
- Governance bodies can advise on the needs and structure of the PRO system, inform the selection of appropriate measures, and provide examples of good practice in using patient-reported outcome measures (PROMs) in care
- Governance can be centralized, decentralized, or a hybrid. Regardless, governing bodies should be composed of individuals with multidisciplinary perspectives
Overview
Governing bodies provide strategic input on the structure and process of implementing and evaluating the PRO system. Governance is often overseen by a committee of individuals with multidisciplinary perspectives, who may or may not already be aligned with a role in existing organizational leadership. Governance groups should develop scopes of work and identify how they will make decisions regarding the PRO system. Additional activities in their domain include identifying current and future needs of the PRO system, disseminating good practices, and providing guidance on the selection of specific PROMs.
PRO system governance can be centralized, decentralized, or a hybrid. In centralized models, a core decision-making body holds most of the say in what PROMs are collected, how they are collected, how the data is used, and how the system generally operates. In decentralized groups, these decisions are deferred to the specific group who has interest in collecting and using PROMs. Hybrid approaches exist but can lead to confusion regarding who the ultimate decision-maker is.
Questions and Considerations
A. What is the general purpose of a PRO system governance group?
- Provide oversight for the development and management of a PRO system
- Develop and enforce standards and policies to guide decision-making about the PRO system
- Ensure data security and consider ethical and legal issues
B. What activities should governance groups undertake?
Define a scope of work and decision-making process
- Establish a charter including a mission and scope of work
- Re-review charter with some regularity (e.g. annually) to determine whether it still meets the needs of the health system
- Identify how decisions will be made and transparently communicate this decision-making process within and outside the governance group
- Identify mechanisms for reporting decisions and results to health system leadership
- Create a process for managing and prioritizing PRO system implementation requests
Identify the current and future needs of the PRO system
- Align goals of the PRO system and health system
- Explore the need and value of PRO information across different groups (e.g. clinical, quality improvement, research)
- Use needs assessment methods such as interviews, focus groups, surveys, and observational studies to learn about the current environment and potential value of a PRO system
- Connect with clinical champions to explore desirable attributes for a PRO system
Disseminate good practices for use and management of the PRO system
- Develop or identify specific practices and requirements for using the PRO system
- Identify standards for how the PRO system is designed and used in practice
- Consider whether there are common data standards, centralized reporting tools, or other standard data features which should be included in the PRO system
- Disseminate best practices as they emerge (e.g. automating health risk screening in primary care)
- Consider how to facilitate the PRO system’s sustainability
- Define metrics that can be used to evaluate the success of the PRO intervention and its implementation
Provide guidance on the selection of specific PROMs
- Selection of relevant PROMs is essential to achieving the goals of the PRO system
- Governance can provide input on measure selection, and create repositories of ‘endorsed’ PROMs
C. Who can be included in PRO governance?
Members of an existing organizational leadership structure
- Decision-making is sometimes more effective when aligned with existing organization structures
- Sometimes these groups are better aware of existing priorities in the health system and can tailor recommendations to be mutually beneficial to both the health system and the PRO system
Multidisciplinary perspectives
- Diverse perspectives should be included in the PRO governance decision-making. These can include clinical champions, clinical staff, information technology experts, PROM specialists, informaticians, legal experts, project managers, data analysts, and patient representatives
D. What types of governance structures can be used?
Centralized
- Involves decision-making by a single person or specific group of people regarding all, or nearly all, aspects of the PRO system
- Promotes effective PRO implementation at a system-level
- Decreases the likelihood that patients are subjected to redundant inquiries to complete PROMs across the healthcare system
- May make it more difficult to implement specialized or condition-specific PROMs, which may result in PROM data that is too general and not optimized to inform patient care
- Involves centralized processes that may be slow-moving and bureaucratic
Distributed
- Allows autonomous decisions about the implementation, oversight, and use of specific PROMs that fit the needs of specific individuals or groups (e.g. departments)
- Provides more flexibility and allows different individuals or groups to adapt content and approaches to fit their patients’ clinical needs
- May be more burdensome as groups have increased management responsibilities versus a centralized model
- Can lead to patients being asked to provide redundant PROM data across settings
- May make collaborating and data-sharing more challenging
- May reduce ability to conduct quality improvement reporting or research
Hybrid
- A core central entity provides a set of rules for implementing and using PROM data, and provides some oversight, but allows for more customization and flexibility across groups
- Could be used in both centralized and decentralized institutional cultures
- Can lead to confusion and dispute regarding who is responsible for final decisions
Relevant Primary Resources
The information presented here is an overview of governing the system. For more detailed information please see the following sources:
Background And Citing The Proteus-Practice Guide
Nothing in this Guide should be construed to represent or warrant that persons using this Guide have complied with all applicable laws and regulations. All individuals and organizations using this template have the responsibility for complying with the applicable laws and regulations or regulatory requirements for the relevant jurisdiction.
Each chapter of the Guide lists the key foundational resources that informed its content. To appropriately recognize the foundational resources, we encourage you to cite both the Guide and the relevant foundational resource(s). Recommended citations are provided here.
Suggested Citation
The PROTEUS Guide to Implementing Patient-reported Outcomes in Clinical Practice
A synthesis of resources. Prepared by Crossnohere N, Brundage M, Snyder C, and the Advisory Group, 2023. Available at: TheProteusConsortium.org.
Further Reading
The Guide draws primarily from the foundational resources cited in each chapter. Please click here to find a selection of other relevant references.