Author and librarian Lois Horowitz1 was remarkably prescient when she wrote in 1984, 'Not having the information you need, when you need it, leaves you wanting. Not knowing where to look for that information leaves you powerless. In a society where information is king, none of us can afford that.'
Horowitz was right, information is king, but that is only half the story. The source must be reputable, and the data robust. I would add a further essential quality: that the information is intelligible.
As Dr VJ Joshi explains below, PHIN was set up to address a particular need - patients finding out about private healthcare - where information is reliable and understandable. But there is a delicate balance to be struck, and doctors have good reason to feel that they are one of the most heavily regulated and scrutinised professions in the UK.
So is there anything for doctors to fear, personally, from PHIN publishing information about the care they provide? Dr Joshi's explanation about how PHIN will analyse and publish data should provide reassurance on this point, particularly the fact that consultants will be able to review the accuracy of data relating to their practice.
The publishing of information by PHIN will undoubtedly lead to probing questions from patients. Consultants are used to discussing treatment options with patients and increasingly are experienced in dealing with questions about their clinical outcomes. Successful discussions with patients will depend in part on anticipating challenging questions, but also in being able to deal with them in a style that is straightforward, honest and avoids jargon.
How did PHIN come about, why was it created/instigated?
Dr VJ Joshi: PHIN was created to address a lack of information transparency in privately funded healthcare. In 2014, an investigation by the Competition and Markets Authority (CMA) concluded that the information available to people considering private healthcare was inadequate.
Patients did not have sufficient information available to understand and compare their options to help them make informed choices. In response, the CMA published the Private Healthcare Market Investigation Order 2014, which places new legal requirements on hospitals to meet common data standards.
PHIN is an independent, not-for-profit organisation which is responsible for receiving data from hospitals and for publishing a range of performance measures to help inform patient choice of care providers.
Having joined from a medical and clinical informatics background, I strongly believe that while patients will always be PHIN's primary focus, the medical community can leverage genuine benefits from PHIN's work. The data is a powerful tool, enabling consultants to demonstrate the scope and quality of their care to patients, contributing to public understanding of clinical quality, and promoting service improvements.
What is its remit/purpose?
Dr VJ Joshi: PHIN is mandated by the UK government to collect data regarding all privately funded admissions and publish key performance measures, allowing hospitals and consultants to evidence the breadth and quality of their services.
Ultimately this will support patient choice through shared decision making, but also bring much needed transparency and confidence to this sector, which until now has simply not been able to evidence the care it provides in a comprehensive and comparable way.
What sort of information about consultants does/will PHIN provide to patients (and when)?
Dr VJ Joshi: Ultimately PHIN will be publishing up to eleven performance measures at both hospital site and consultant level. However, there is a way to go before we get there, and we will work with consultants at every stage of the journey to ensure their measures are accurate and present a fair picture of their care.
Currently, our website includes a range of simpler measures at hospital level only. We will begin publishing measures about consultants from May 2018, starting with procedure numbers and average length of stay.
We have been directed to look at the following, considering publication where the data supports an accurate and patient-friendly presentation:
- how many patients seen and for what
- checking for success; that is, an improvement in a patient's condition as a result of the intervention (eg, RCSEng recommends Q-PROMs for cosmetic surgery)
- checking for serious complications, such as bacteraemia, mortality and so on
- understanding patient feedback
- participation in relevant registries and audits.
In other words, all basic Good medical practice material. For more specific information, I would advise readers to visit the consultant section on our portal. In the longer term, this is also where they would log in.
It is even more important that consultants' measures are based on accurate data, and presented in a fair way. All consultants will have every opportunity to review the accuracy of their data, see their aggregated performance measures, and crucially, be asked to sign-off their data before aggregated measures are made available to patients.
We are working hard to engage with consultants on their data, not only through hospitals, but by working alongside professional bodies and representative groups also.
I strongly believe that while patients will always be PHIN's primary focus, the medical community can leverage genuine benefits from PHIN's work.
What is the benefit to patients and consultants of doing so?
Dr VJ Joshi: PHIN exists to improve data quality and transparency, and to make more robust information about private healthcare available than ever before. The measures already published have real value in helping patients understand and question their care choices, and add to meaningful conversations with their hospital, consultant, and referring clinician. In the longer-term we will see this value for patients increase as we publish further measures.
While aggregated performance measures are yet to be published online for individual consultants, the data collected by PHIN is also of great benefit to them professionally. Having access to independently validated whole-practice performance data brings with it unique opportunities to improve clinical understanding and contribute to evidence based medicine.
For the first time in the UK we have standardised clinical coding across private and NHS care, and we are collecting more measures of patient reported outcomes than ever before, including cosmetic Q-PROMs. On a practical level, access to independently validated, standardised data on private care to add to NHS care can assist revalidation and appraisals; should consultants take advantage of the opportunity PHIN's data presents.
What action should consultant members take as a result?
Dr VJ Joshi: Engaging with PHIN is simple; the data is submitted by the hospitals where consultants practice, and the data will be fed back to each consultant via PHIN's secure online portal, due to launch in October this year. The portal will provide in-depth resources that support data accuracy checking, and outline trends and benchmarks to enhance knowledge.
In the meantime, it's important to ensure that consultant details held by the GMC are accurate, particularly the contact email, as PHIN will be using these details to give consultants access to their data.
Consultants should also check whether the hospitals they work at are on PHIN's website and their common procedures listed. Over 280 hospitals are published with performance measures, covering 150 common procedures.