Supporting the routine collection of patient reported outcome measures (PROMS) for the national clinical audit work package 2 how should proms data be collected?

Objectives

Across health care settings, electronic patient reported outcome measures (e-PROMs) can be administered using a range of systems and administration modes (for example web-based, mobile phones or kiosks). The use of e-PROMs is not widespread in the UK and there is no clear guidance regarding the best ways in which to deliver the questionnaires, set up and implement the systems required, or feedback data to clinicians, other health care professionals and patients.

The overall aim of the research described in this report is to understand current practice for the administration and application of e-PROMs in health care settings, to inform the use of these measures in the National Clinical Audit (NCA), and to identify areas where future research would be beneficial. The specific objectives are threefold:

1. Identify and critique the existing evidence on the use of electronic methods for the administration of PROMs for routine use in health care settings and the systems used to deliver them.

2. Review the potential benefits, uses and applications of e-PROMs.

3. Highlight the challenges involved in the collection and implementation of e-PROMs.

Methods

Existing literature and interviews with clinicians and academics working in the field were used to understand the current practice for the administration and application of e-PROMs. To source existing literature, four different approaches were used. The first approach involved searching International Society for Pharmacoeconomics and Outcomes Research and the International Society for Quality of Life Research websites which list publications relating to e-PROMs. The second approach involved searching several conference abstract websites. The third approach involved searches for UK and international guidelines, recommendations and standards. The fourth approach adopted was to ask the interviewees whether they knew of relevant papers and reports (published or unpublished).

The qualitative study was carried out with a selection of clinicians and researchers with experience of developing, applying and using e-PROMs. Potential interviewees were identified from contacts known by the research team. A snowball approach was used to develop a long list of potential interviewees who were asked to take part. A semi-structured interview guide based on the objectives of the project, the results of key review papers in the area, and the personal experience of the research team were used. Interviews were transcribed verbatim, and analysed using a simple content analysis approach where the interview topic guide was used to code the interviews.

Results and conclusions

A wide range of published articles, reviews and abstracts were sourced. Nine interviews were carried out with academics (n=3) and clinicians (n=6). The data sources provided information regarding: the mode of administration and specifics of collecting e-PROMS, the benefits and impacts of using e-PROMs, engagement of others regarding the use of e-PROMs, and the challenges of implementing and using e-PROMs. The results provide important evidence that can be used to inform the implementation of e-PROMs as part of the NCA, and about potential difficulties in the widespread application of these systems. From this, recommendations for the implementation of e-PROMs can be drawn. These include:

 Using multiple data collection modes to improve response rates. There is some evidence to suggest that there are limited issues of equivalence of using different modes of administration.

 Allowing multiple places of completion (i.e. home and in clinical settings).

 Gaining support from all key stakeholders (i.e. clinicians, IT departments, support staff, patients).

 Using the PROMs data in clinical decision making.

 Developing systems in a collaborative manner.

 Choosing which PROMs to use based on the available evidence and the purpose of the system.

There are a range of limitations of existing e-PROMs systems. The systems do not always have the full support of clinicians and other key stakeholders (such as other staff or managers and commissioners) involved in their implementation. Mixed response rates are also reported. It is unclear how best to maximise response beyond offering as much flexibility as possible.

Future research

The results of this study highlight a number of areas where future research would be informative for the NCA. These include:

 Investigating how to maximise response rates.

 Investigating how to engage clinicians and users.

 Investigating how to present the PROMs data to patients, clinicians, providers and commissioners.

 Evaluating the benefits of collecting PROMs.

 Carrying out usability research into the presentation of the e-PROM systems across different modes of administration.

 Investigating how different clinical pathways would most benefit from e-PROMs.

 Investigating equity issues and the impact of e-PROMs on the application of the systems.