“First, to do no harm” is a phrase known to all clinicians. It’s one of the first things doctors learn and is an ambition which stays with us all throughout our careers in medicine. Perhaps unsurprisingly, it also forms the basis of most safety and clinical quality programmes in healthcare systems around the world, including in the UK. Unexpected readmissions, adverse incidents, and avoidable mortality are all commonly used to measure and benchmark quality, or more properly, failure of quality. Important though this is, however, there has to be much more to healthcare than avoiding harm. Patients don’t come to hospital “just” to be safe; they come primarily for the relief of pain or illness and improvement in quality of life and general health. Therefore, a rather wider definition of clinical quality is “safe, appropriate, cost-effective advice, care and treatment, and, most importantly, with an outcome that benefits the patient.”
The main outcome routinely measured is death, partly because it is fairly easy to define and to measure, but when it comes to routinely measuring what health benefit is gained by patients who don’t die, it is surprising how little data there are. A passionate advocate of routinely involving patients in measuring outcome, Alan Maynard who, sadly, recently passed away, used to regularly cite Florence Nightingale, who, in 1863, was routinely measuring whether patients were “dead, relieved, or unrelieved.” Alan Maynard would then typically point out that “over 200 years later healthcare systems remain tardy in measuring patient outcomes.”
If outcomes data were collected routinely in a standardised manner, they would provide positive measures of quality in real world practice, and feedback to clinicians would drive continuous improvement in health benefit and quality of life delivered by treatment.
Even when we look at the NHS Outcomes Framework, there are limited few genuine outcome indicators at the provider level. Instead, it relies heavily on population measures, mortality (survival rates for cancer), measures of patient experience, and various types of process measures. So, how better to measure the health benefit or quality of life improvement gained from day-to-day treatment in our healthcare system?
In the late 90s, some private healthcare hospitals initiated a programme of routine collection of patient reported outcome measures (PROMs) for patients receiving common surgical treatments. Patients were asked to complete a health status survey before and three or six months after treatment. Good response rates were eventually achieved (60 to 80%), and the feedback to hospitals and consultants helped drive clinical improvement.
Then, in 2009, the National PROMs Programme was implemented announced in the NHS as the first programme of its kind in the world. PROMs were to be routinely offered to every patient having hip or knee replacement, hernia repair or surgery for varicose veins. High response rates have been achieved for the orthopaedic procedures, but responses for hernia repair and varicose vein surgery have been disappointing. Unfortunately, we made mistakes in developing and promoting the programme, particularly in communicating the clinical benefits to surgeons, many of whom could not see the value of the initiative for their practice.
However, when the survey tools are properly validated as objective measures, there is great value for patients and clinicians from both the first pre-treatment survey and the second survey. Once patients have completed the first survey laying out what matters to them, the resulting information can then be used by the consulting surgeon to assist in selection of appropriate treatment. Treating what matters to the patients, where possible, is more likely to deliver a good outcome as measured in the second follow-up survey.
Attitudes are now changing, partly due to the requirements of revalidation, but, sadly, NHS England has pulled back on the National Programme just at a time when many other countries, led by the United States, are pushing forward with similar programmes.
Those working in private hospitals, clinics, and NHS pay bed units are now planning to demonstrate the benefit that routine outcome measurement brings. The Private Healthcare Information Network (PHIN), under mandate from the Competition and Markets Authority, has been working with the Royal College of Surgeons of England to select a number of specific, well validated PROMs to be offered to patients having common surgical procedures across the independent sector. Work has already started on delivering this programme across the sector, and early results are expected later this year, bringing much needed objective feedback and learning on what matters to patients, enabling the most appropriate treatments to be selected and clinical outcome to be continuously improved over time.
Reducing harm caused by healthcare is, of course, important, not least in the private sector as the Secretary of State has indicated recently, but there is also a need to better demonstrate the positive benefits that our healthcare system brings in its day-to-day activity. Listening to patients is an essential part of patient focused care and involving patients in routinely measuring outcome is integral to delivering and improving value for both patients and the system as a whole. In the spirit of patient centred care, it is perhaps time that NHS England and other commissioners begin more systematically to assess health benefit as measured by patients across the system.
Andrew Vallance Owen has worked across the NHS and private healthcare. He was Chair of the Department of Health’s PROMs Stakeholder Group (2009-13), Chief Medical Officer for BUPA for 17 years, and now holds a number of non-executive posts including Chairman of the Private Healthcare Information Network (PHIN) and Senior Independent Director at the Royal Brompton and Harefield NHS Foundation Trust.