Identifying Barriers and Facilitators: Chapter 2

• Some patient populations may have trouble completing PROMs (patient-reported outcome measures) due to physical or cognitive impairments, low literacy, and language/ translation issues
• Not all patients have access to or choose to use technology (e.g. computer, internet, patient portal account), through which PROs are often collected
• Patients may be confused or burdened if PRO data is collected using a separate system from the clinic’s other systems such as those used for billing, scheduling, messaging, or clinical trials

• Providing additional support to patients
• Offering alternative modes of PROM administration as requested by patients
• Having clear protocols for proxy reporting

• Patients may not complete PROs if it is unclear how these measures are relevant to them and their care team or how the data will be used

• Communicating a clear purpose to patients regarding why PRO information is being collected and how it will be used
• Using measures that have face validity and are relevant to the patient population of interest
• Demonstrating how the measures affect patient care (e.g. clinicians should explicitly state that they have reviewed the patient’s PRO data)

• Poor organization of PRO systems may lead to patients being asked to complete the same PROMs multiple times or for different purposes without explanation, which may be frustrating and burdensome
• Many PRO collection systems, particularly those that are web-based or electronic, can be complex to navigate; it can be difficult to know when to complete the PROMs, where in the system the PROMs are located, and how to review and submit PROMs
• Multi-item PROMs can be time consuming to complete
• PROs are often collected alongside other outcome measures, so it is important to consider the burden of PRO collection within the full context of patients’ care

• Unifying PRO collection as much as possible across healthcare settings
• Implementing intuitive PRO systems that use principles of user-centered or human factors design
• Purposefully selecting succinct measures that address the needs of the target population

• Logistical challenges such as difficulty finding the PRO system, remembering when to check the system, or being able to access the system pose barriers to the use of PROs – particularly if the PRO data is not fully integrated in the electronic health record
• Features of systems such as requiring additional logins or redirecting clinical teams to platforms outside of their typical workflow or which have an atypical ‘look and feel’ can deter PRO system use

• Co-designing PRO systems with clinical and patient input to promote integration with the routine workflow and established systems
• Providing training to familiarize clinical staff with PRO system features

• Integrating PROs into clinical care in any systematic way is likely to disrupt preexisting workflows
• These disruptions can be burdensome to address, requiring the adoption of new administrative and clinical patterns
• PRO information can complicate a visit if additional health concerns are identified as a result of PRO data collection, particularly if those concerns are outside of the clinical scope of the provider the patient is seeing

• Integrating the PRO data in the existing workflow to the extent possible
• Consulting with the clinical team on how best to incorporate new workflows
• Embedding resources and decision support to promote efforts to address identified concerns
• Providing resources to patients for self-management

see Chapter 11, Responding to Issues

• Providing healthcare is notoriously demanding, and clinicians are already routinely stretched thin. Clinical teams likely require training to use PRO systems and integrate PRO data into clinical decision-making. Staff turnover requires a regular training program
• Adding responsibilities, such as collecting and integrating PRO data into decision-making daily is time and resource consuming
• PRO collection may compete with the demands of collecting other quality metric data that are required and tied to reimbursement

• Designing PRO systems so that they inform rather than impede the clinical encounter (e.g. helping to focus discussion by identifying clinically relevant issues requiring attention, streamlining the review of systems)
• Automating the process

• Clinicians may be hesitant to use PRO data if they are uncomfortable in how to interpret the information or if there is no clear management strategy for the identified issue

• Presenting data to promote understanding and use
• Embedding resources and decision support to promote efforts to address identified concerns

see Chapter 9, Presenting Results, and Chapter 11, Responding to Issues

• Upfront and maintenance costs when developing or purchasing PRO systems
• Costs associated with training clinical teams and staff and having staff on hand to support completion by patients

• Outlining how collecting and integrating PRO information will be cost saving to the administration, or facilitate new billable expenses for reimbursement, or meet quality standards

• Various stakeholder groups may disagree on the purpose and value of collecting and integrating PRO information into clinical care
• It can be difficult to foster buy-in for PRO systems across the many stakeholders potentially impacted by these systems

• Facilitators to promote shared values include having a PRO champion who has expertise in and passion for the collection of PROs at the point of care

• Upon integrating a new PRO system there should be efforts to review and evaluate its performance. These evaluations may require additional resources and new approaches

• Planning for the evaluation at the time of implementation
• Considering quasi-experimental/ quality improvement approaches, in addition to more traditional evaluation designs

see Chapter 12, Evaluating the Intervention

• Legal and regulatory issues around the use of PRO information have been raised; for instance, it is unclear who is responsible for medical decisions made based on PRO data that have risks for patient health

• Consulting with the legal/ regulatory officials of the healthcare system prior to implementing new PRO projects
• Providing information to patients on how data will be used/managed

see Chapter 16, Considering Ethical/Legal Issues

• PRO systems cannot be one-size-fits-all, but rather must be made based on the unique goals of the healthcare setting resources available and specific context
• There is no single governance structure that can be uniformly applied across settings

• Adapting the PRO intervention approach to meet the institution's specific goals, resources, and context

• Different PRO systems have various features
• While some systems may be easily integrated with existing electronic medical records, others cannot be
• Systems may not allow for monitoring of missing data, present results in real time, or be able to map onto results benchmarks and other normative values
• Some systems are more customizable than others

• Selecting an existing PRO system
• Developing a new PRO system guided by the goals of the program and the resources available

• Lack of expertise of individuals who can inform the design, implementation, or evaluation of PRO systems
• Lack of expertise on specific patient populations, or on diversity, equity, and inclusion topics in general

• Toolkits and resources from PROTEUS and other relevant groups
• Collaboration and partnerships across institutions