Table 1 PROMs Program Implementation Considerations

Setting up a implementation team

Establish a team that plans and implements the PROMs program is a key step towards success. It is advisable to have health care providers and patient representatives on the team, as well as PROMs experts to assist with technical aspects of the program. The committee composition will vary according to the setting

Identifying purpose

Identify a clear purpose for the PROMs program, which could include enhancing clinical practice (e.g., screening, monitoring), evaluating the impact of a healthcare program or service, evaluating the performance of healthcare providers, or a combination of one or more of these purposes. A clear purpose is crucial for identifying the end-users of PROMs data and for each of the subsequent steps

Identifying target population

Identify and describe the target group(s) of patients that will complete the measure(s) based on their clinical condition(s), age group(s), language, ability to self-report or proxy, and feasibility of various administration modes (in person, via phone, web-based). These factors should all be considered when selecting a PROM

Selecting a PROM(s)

The choice of PROM(s) is a delicate process whereby several factors have to be taken into account including the purpose of the measurement, measurement properties of available PROMs, patient acceptability, and a number of practical considerations (e.g., mode of administration, languages available, reference period, license fees). Multiple PROMs could be used in the same program; a combination between a generic and a disease-specific PROM is common

Using electronic tools

Where feasible and accessible, using electronic platforms for data collection minimizes clinical and administrative burden, ensures timely feedback of PROMs scores to clinicians and patients, and allows proper presentation of PROMs data to facilitate its interpretation. Ideally, integrating PROMs into electronic health records for the purposes of data collecting and reporting has been reported to be the most efficient and successful usage of these platforms

Change management

The introduction of PROMs into clinical settings presents a significant change to clinical workflows and to care practices that both providers and patients are accustomed to. Such changes vary from one setting to another depending on the presence of other similar initiatives. PROMs programs implementation teams need to assess the organizational readiness and identify factors and actions that would facilitate such changes to take place. This would influence the extent of training and education required, and the pace of program adoption

Education and training

This involves training all potential PROMs end-users within a given setting including providers, patients, and administrators, and includes explanation of the PROM(s) that will be used (e.g., construct being measured, response options), scores meaning and interpretation of their changes, and action items related to the PROM, as well as methods of collecting and using the data

Collecting PROMs data—pilot

Identify the timing, frequency and time window of measurements, as well as mode (e.g., paper-based, via phone, web-based) and place (e.g., home, clinic) of PROM(s) administration; these all depend on the purpose of measurement and the clinical setting where a PROM is implemented

Using PROMs data—pilot

Use PROMs data based on the purpose of the program (e.g., supporting clinical patient management, evaluating quality of healthcare services). The usefulness of data will depend on its quality, and on several previous identified factors (e.g., mode of data collection and reporting, user buy-in, missing data)

Reporting and feedback—pilot

Report PROMs data back to target users including providers, patients and administrators based on the intended purpose of the program. PROMs data reporting will vary by the intended user

Evaluation of pilot phase

A pilot phase has shown to be a very useful approach to evaluate various aspects of the PROMs program before widespread use in a given clinical setting. It allows evaluating education and training of the clinical teams, the mode, timing and frequency of data collection, the reporting and use of PROMs data by targeted users (e.g., clinicians, administrators), and other aspects of the program. Potential gaps or challenges identified in this phase could be addressed before widespread implementation

Upscale and spread PROMs program

After the pilot phase and implementation required revisions, the PROMs program could be scaled up to the entire target clinical setting and population. Incorporating PROMs into existing outcome measurement frameworks has been reported to ensure better uptake and sustainability of the program and better use of the data