OHE Response: The National PROMs Programme Consultation

This post summarises OHE’s response to NHS England’s national PROMs programme consultation.

In 2009, the English NHS began collecting patient-reported outcome measures (PROMs) for four elective procedures. Since then, condition specific and generic (EQ-5D) PROMs have been completed by patients both before and after these four procedures. PROMs are intended to gather quality of life data from the patient perspective, which can be used to inform decision-making at all levels of the NHS.

In 2010, when the PROMs programme was just underway, we noted (in a joint OHE/King’s Fund publication) that:

“The PROMs initiative is a truly remarkable development for the NHS – and a first internationally: the NHS will be the first health care system in the world to measure what it produces in terms of health, rather than in terms of the production of health care” (Devlin and Appleby, 2010)

Reflecting on the state of play in 2014, we noted:

“So how has this laudable initiative progressed since its initial success? The answer is, sadly, barely at all…the PROMs programme has effectively stalled. The restructuring of the NHS led to responsibility for the PROMs programme shifting from the Department of Health to NHS England…The problem seems to be that, as with many other NHS activities, the 2012 reorganisation led to a loss of focus for the PROMs programme.” (Devlin, Appleby and Parkin, 2014)

In 2006/7, OHE initiated an OHE Commission on NHS Outputs, Productivity and Performance, where we noted:

“A large body of data is available on health care inputs and expenditures; far less is known about the outcomes that the resources and activities produce. Yet, knowing the outcomes achieved by health services is essential to being able to achieve the greatest benefit, and the best patient care, from the resources used. The effectiveness, efficiency and accountability of the NHS all depend on knowing the outcomes it is achieving.” (OHE, 2008)

We continue to hold that view. The NHS PROMs programme represented an important step forward – and deserves the full support of government and the NHS.

NHS England has recently held a consultation on the future of the national PROMs programme, an opportunity which has been welcomed by OHE.

OHE’s key recommendations:

• The PROMs programme represented a bold, world-leading initiative in 2009. It has the potential to be the centre-piece of an outcomes-led NHS. It deserves strong leadership and a renewed commitment to putting patients’ health outcomes at the heart of health care decision making.
• More effort should be made to ensure the data are presented in ways that are informative and accessible for the (multiple) decision makers to whom they are relevant: patients; clinicians; providers; commissioners; regulators.
• The remit of the PROMs programme should be extended beyond the routine collection of PRO data in 4 elective procedures introduced in 2009. ‘Real world’ data from patients should be the cornerstone of a modern health care system.
• PROMs data are vital to understanding the effectiveness and cost effectiveness of NHS services. For this reason, we strongly urge NHS England to continue to field both a brief, generic PRO questionnaire in combination with a detailed, condition-specific measure, where available. Generic PRO data provide the crucial, common denominator with which to measure outcomes across treatments and diseases.
• NHS England should strive for excellence in its use of PROs, both in seeking to minimise the costs of data collection (e.g shifting to electronic data capture; considering adopting sampling rather than routine data collection in some cases); and maximising the relevance of the data to the patients providing it; and the impact of the data as a driver of quality improvement.

Access OHE’s full response to the NHS England consultation here.

To learn more about routine measurement of patient outcomes, see:

• Appleby, J., Devlin, N., Parkin, D. 2016. Using patient reported outcomes to improve health care. Wiley.

Examples of OHE’s PROMs related work:

• Parkin, D., Feng, Y., Devlin, N. 2016. What Determines the Shape of an EQ-5D Index Distribution? Medical Decision Making (in press)
• Calvert, M., Thwaites, R., Kyte, D., Devlin, N. 2015 Putting patient-reported outcomes on the ‘Big Data Road Map’ , Journal of the Royal Society of Medicine, 108(8), pp. 299-303.
• Feng, Y., Pistollato, M., Charlesworth, A., Devlin, N, Propper, C., Sussex, J. 2015. Association between market concentration of hospitals and patient health gain following hip replacement surgery. Journal of Health Services Research and Policy, 20 (1), pp. 11-17.
• Feng, Y., Parkin, D., Devlin, N. 2014. Assessing the performance of the EQ-VAS in the NHS PROMs programme. Quality of Life Research, 23(3), pp. 977-89.
• Appleby, J., Poteliakhoff, E., Devlin, N., Shah, K. 2013. Using patient reported outcome measures to estimate cost effectiveness of hip replacements in English hospitals. Journal of the Royal Society of Medicine. 106(8), 323-331.
• Gutacker, N., Bojke, C., Daidone, S., Devlin, N., Street, A., 2013. Hospital variation in patient-reported outcomes at the level of EQ-5D dimensions: evidence from England. Medical Decision Making, 33(6), pp. 804-818.
• Nuttall, D., Parkin, D., Devlin, N. 2013. Inter-provider comparisons of patient-reported outcomes: Developing an adjustment to account for differences in patient case mix. Health Economics. 24, 1, pp. 41-54.
• Barham, L., Devlin, N. 2011. Patient-reported outcome measures: implications for nursing. Nursing Standard, 25(18), pp. 42-5.
• Gutacker, N., Bojke, C., Daidone, S., Devlin, N., Parkin, D., Street, A. 2011. Truly inefficient or providing better quality of care? Analysing the relationship between risk-adjusted hospital costs and patients’ health outcomes. CHE Research Paper 68. University of York
• Parkin, D. and Devlin, N. 2011. Using health status to measure NHS performance: Casting light in dark places. BMJ Quality and Safety.
• Devlin, N. J., Parkin, D. and Browne, J. 2010, Patient-reported outcome measures in the NHS: new methods for analysing and reporting EQ-5D data. Health Economics, 19, pp. 886–905.

For more information please contact Professor Nancy Devlin at OHE.