Could Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) form a bridge crossing the public - professional divide?

PROMs event at King's Fund (in assoc w London School of Hygiene &Tropical Medicine)

3rd Dec 2013

Thanks to John Appleby and Nick Black for hosting a great, insightful, day covering all aspects of patient reported health status; from heart surgery to consultation with your family doctor, including outpatient services for women with heavy menstrual bleeding and mental health services. Topics varied from empowering patients to developing the statistics and economics underpinning this approach.

Placing PROMs in context

There is a growing focus on health outcomes for improving health services, especially relating to regulation and funding health services and hospitals. On the other hand, there is also a growing pressure to include patient’s opinions, both on moral grounds and in terms of accountability. This acknowledges that the clinician’s view of priorities for treatment for a patient are not always consistent with the patient's own view. One example may be where the clinician considers the benefit of a particular procedure on a particular aspect of health, whereas the patient may see this as only one part of their overall health and wellbeing, in the context of their social or family life. Therefore asking the patient their perceptions of their health status, in a systematic way, attempts to bridge the gap between a patient's lived experience, and the evidence-based outcomes focused approach of modern medicine and health systems.

Diversity of uses of PROMs

Different perspectives or motivations for using this approach were covered today. Robert Johnstone gave a patient's perspective and requested that PROMs should be used to inform and empower patients. Eugene Nelson and Tim Hughes mentioned how discussing PROMs within a patient consultation could improve communication between patient and clinician.  Using PROMs could improve clinicians understanding of patient's values as advocated by Ipek Gurol-Urganci, or improve services, as described by Philip van der Wees in an international study. Philip also discussed how PROMs could be used to make decisions about investment or commissioning of health services, whilst highlighting the conflicts of interest between using detailed information for organisations to improve services and transparency of sharing data to enable fair and transparent regulation and competition. Finally PROMs are used within clinical research, requiring assurance of robust validity and sensitivity; many issues around methods and analysis were debated today.

Patient Reported Experience Measure (PREM)

Improvement of quality of healthcare has emphasised different aspects over recent decades. These have included access to services, clinical effectiveness (frequently considered as 'evidence-based medicine/practice). Recently, patient experience and safety have stepped into the limelight. Institute of medicine describe four domains of quality of healthcare: effectiveness, cost, patient experience and safety. Patient Reported Outcome Measures can help judge effectiveness and safety, whilst the more recent Patient Reported Experience Measure addresses experience. Andrew Hutchings described his work developing this 'new kid on the block' using data collected by East Midlands Patient Experience Service. Andrew analysed how experience may relate to outcome and found there was a small but significant relationship between experience and outcome; i.e. patients who report good experience are likely to have better health outcomes, although being a statistician (!) he wouldn't be drawn on whether one caused the other. Similarly there is a relationship between medical complications following a procedure (eg surgery) and PREM score. Patients who reported better experience had lower probability of reporting a complication. Although some clinicians express concerns that PREMs might be influenced by the 'process' of delivering care, Andrew was confident (as much as a statistician can be!) that PREMs were actually measuring quality. Another issue was raised by Paul Sullivan who asked whether PREMs might be influenced by individual personality types, for example one person may respond in a 'negative' way, whereas another person receiving the same care might respond in a ' positive' way. If this were the case, PREM score may be predicted to follow PROM scores, as they are both subjective measures. Andrew felt this wasn't a strong factor, but hadn't included personality aspects into the analysis.

Use in clinic and aggregating data

Philip van der Wees discussed the tensions between using PROMs as part of the clinical consultation and as a way of reporting health organisation performance, which may relate to funding. Philip gave us two examples where these two aspects have been brought together; in Minnesota, clinical data is integrated with regional database and reporting. In the Netherlands mental health services routinely use PROMs as part of the patient consultation, while the provider company aggregates the data for quality improvement benchmarking.

An interesting point made by Jonathan Hill was that whilst 'before and after measures' were seen by physiotherapists as added bureaucracy, when they were asked to report the PROM at every session, they used this as a useful part of the consultation with the client. Eugene Nelson gave examples from US, Canada and Sweden where PROMs are used alongside e-health to fully engage patients with care planning.

Applying PROMs to long term conditions (LTC)

Adam Glaser, from National cancer survivorship programme gave a perspective from the growing need for support for people with long term conditions. Although PROMs were originally developed to capture a specific health intervention, they can be put to good use monitoring long term changes and unmet needs. Similarly Ben Ellis and Jonathan Hill are developing generic multidisciplinary PROMs for musculoskeletal conditions.

Challenges

Ongoing and future challenges with PROMs and PREMs were debated. Nancy Devlin described new measures of Quality of Life (EQ5D-5L); with increased sensitivity but potentially more difficult for patients to understand. James Coles and David Parkin debated case-mix adjustment which can be critical in comparing different providers or for research outcomes. Andy Street described how missing data can lead to misleading summary data. Eugene Nelson emphasised the need to communicate PROMs findings to patients as well as clinicians. Both of these groups could be put off by the more ‘academic’ interpretation of PROMs: reliability, validity, funnel plots etc...!

Overall I felt it was fascinating to hear so many diverse perspectives on capturing patient’s subjective assessments of their health and wellbeing. I was encouraged that these approaches are becoming mainstream and influencing clinical and health commissioning decisions. Hearing several comments about using PROMs/PREMs to enable patients to participate in decisions about their health is the epitome of ‘Nothing about me without me’, I think. However I was slightly disappointed that I hadn’t heard very much about patients and public being involved in the process of developing the measures and research questions. I’d like to think PROMs/PREMs may become a bridge between the public (patients and carers) and professionals (clinicians, managers and academics).

Low Carbon Healthy Lifestyles – Transdisciplinary work?

Continued from my previous blog article

 

Working towards a shared goal, i.e. healthy lifestyle and sustainability, could be described as ‘transdisciplinary’ work. This way of working or researching is often overlooked, because expertise and ‘knowledge’ tend to develop within specialties; in this case, public health and environmental science. Unfortunately disciplines have their drawbacks; research may miss opportunities of ‘cross-fertilisation’ as exemplified by the newspaper article mentioned in my previous blog. Furthermore putting knowledge into practice may be hindered because lifestyles are not arranged in disciplines – we need messages that talk to different facets of our daily life at once. I am involved in an international project that will look at the benefits of transdisciplinary research for human development and sustainability science:

“How can we better connect social and environmental sciences to enhance the well-being of people and their environments, especially in the context of poverty?”

http://www.wun.ac.uk/research/bridging-health-promotion-and-sustainability-science-transition-green-economy

A challenge for working in a transdisciplinary way can be terminology - because it is mix of several disciplines titles tend to be long and complicated. Also different disciplines may have different meanings for key terms, therefore some meaning can get 'lost in translation'. How do people talk about these links between health and global climate change? We invented the term ‘Low Carbon Healthy Lifestyles’. Twitter users organise around hashtags, which can be an important seed crystal to grow interest and debate. This is the best I’ve found so far: #climatehealth

A great case study of these overlapping issues are the community projects funded by Natural Choices for Health and Wellbeing (Liverpool Primary Care Trust NHS in partnership with Mersey Forest). See my previous blog article.

http://www.merseyforest.org.uk/our-work/natural-choices-for-health-and-wellbeing/

http://www.projectdirt.com/project/8669/

I have been researching the impact of one of these projects; a therapeutic horticulture project for children. Children and young people from 3 local schools participated in the project, learning about the natural environment as well as benefitting their own wellbeing. I am currently studying how children perceive the gardening project and how they felt it affected their wellbeing. I am particularly interested in how their concepts of nature, ecosystem or sustainability may influence their perceptions of the social world. Are the words and concepts used by the horticultural therapists a critical factor, or is simply being in greenspace therapeutic?

There are ways that tackling climate change can benefit health and wellbeing, however these are often not made explicit. People often consider one or the other, maybe because both health and sustainability are complex topics. I believe bringing these two together, either within global research or local community activities, is a great way to build momentum.

 

Low Carbon Healthy Lifestyles: Goals and challenges shared between health promotion and environmental sustainability.

 The science behind the association between health and climate change is building and becoming mainstream. A few years ago a mini-series within the Lancet was dedicated to these issues (Haines et al., 2009). Prof Anthony McMichael, in his recent review (McMichael, 2013), outlines a concept that human-induced change on a global scale has many risks for health of the world’s population. Climate change is one of several examples of these global changes, others being; epidemics of new strains of influenza virus, a decline in seafood stocks, shortages of fresh water and food security (McMichael, 2013).

From a much more local perspective, in the UK, West Midlands Public Health Observatory have calculated the health impacts on the population of the West Midlands of weather events from projected climate change until the end of the century (May, Baiardi, Kara, Raichand, & Eshareturi, 2010). For the Northwest of England, we looked at this from a different angle; looking at disciplines in health (eg. respiratory, cardiovascular, mental wellbeing) and how these may be affected by climate change events (Bates, Chadborn, Jones, & McVeigh, 2011). Partly, the aim of arranging these impacts around the health issue, rather than the climate event, was to gain interest of health professionals and get information across to them.

Sustainable health leaders are emphasising the co-benefits to health of taking action on climate change (mitigation). Cycling rather than driving the car to the shops improves fitness and decreases carbon-footprint. Growing your own vegetables may improve diet and may improve mental wellbeing through time in greenspace; also it can reduce foodmiles and carbon footprint of fertilisers.

A recent newspaper article described how sustainability could learn vital lessons from the experience of health promotion over the years:

http://www.guardian.co.uk/sustainable-business/communicating-sustainability-behaviour-change-public-health?CMP=twt_gu

Steven Johnson makes a key point; that health promotion has learnt to focus on inequality. Without this focus, well-meaning interventions can exacerbate inequality; the better-off are more able to take advantage of the campaign, and thus improve their health. This is an argument against mass messages, eg TV adverts. Thus advocacy is best at the local level, aiming to reach those suffering from the worst of austerity measures and indifferent consumerism.

Community-based activities are suited to the local context and may be the best way of promoting health and sustainability. I have been studying children’s views of health and climate change using examples of activities that give co-benefits – we coined the term ‘Low Carbon Healthy Lifestyles’(Neil Chadborn, Springett, Gavin, & Dewar, 2011). Young children are often enthusiastic about activities such as cycling and growing vegetables, and show some awareness of the benefits to both health and the environment (NH Chadborn, Gavin, Springett, & Robinson, 2012). Many local organisations facilitate these projects, but often promote either health or environmental benefits. I propose that making explicit links between health and climate change may be beneficial to engaging the public with these activities. Also the shared agenda may strengthen networking between organisations and with schools. I’ll continue this topic in my next blog article.

In this blog I have shown how climate change and health are inextricably linked. While these are global issues, and there is a place for international legislation, we can all take action in our own communities. I believe it’s useful to communicate this explicitly by using phrases such as ‘Low Carbon Healthy Lifestyles’. 

Bates, G., Chadborn, N., Jones, L., & McVeigh, J. (2011). Impact of climate change upon health and health inequalities in the north west of England. Liverpool.

Chadborn, Neil, Springett, J., Gavin, N., & Dewar, S. (2011). Promoting Low Carbon Healthy Lifestyles as new opportunities to tackle obesity and health inequalities. Liverpool.

Chadborn, NH, Gavin, N., Springett, J., & Robinson, J. (2012). “Cycling–exercise or trying to stop pollution”: methods to explore children’s agency in health and climate change. Local Environment, 18(3), 271–288.

Haines, A., McMichael, A. J., Smith, K. R., Roberts, I., Woodcock, J., Markandya, A., Armstrong, B. G., et al. (2009). Public health benefits of strategies to reduce greenhouse-gas emissions: overview and implications for policy makers. Lancet, 374(9707), 2104–14. doi:10.1016/S0140-6736(09)61759-1

May, E., Baiardi, L., Kara, E., Raichand, S., & Eshareturi, C. (2010). Health Effects of Climate Change in the West Midlands: Technical Report. Birmingham.

McMichael, A. J. (2013). Globalization, Climate Change, and Human Health. New England Journal of Medicine, 368, 1335–43.