What is JointPRO?
JointPRO is a remote web-based tool that electronically captures joint-specific patient-reported outcomes (PROs), giving feedback to the patient, and relaying real-time information to the care provider.
What are PROs?
- “A patient-reported outcome (PRO), otherwise know as a patient reported outcome measure (PROM), is a series of questions that patients are asked in order to gauge their views on their own health.”1
- “PROMs seek to ascertain patient’s views of their symptoms, their functional status, and their health related quality of life.”2
- “PROMs measure health by comparing a patient’s health at different times – and thus the outcomes of the care received can be determined.”2
- “The use of PRO instruments is part of a general movement toward the idea that the patient, properly queried, is the best source of information about how he or she feels.”3
What is the need for PROs?
“To measure is to know and if you cannot measure it, you cannot improve it” – Lord Kelvin
The ability to accurately measure treatment efficacy is vital to improve patient care. Traditionally, our appreciation of the effectiveness of any intervention has primarily relied upon adverse outcomes, such as post-surgical outcomes, or clinical indicators. While useful, these measures do not always distinguish the aspects of health that patients consider important, or their relative value to patients.
It is said that ‘the ultimate measure by which to judge a medical effort is whether it helps patients as they see it’4. The introduction of Patient Reported Outcome Measures (PROMs) into the NHS reflects a growing recognition that the patient’s perspective is pivotal in improving the quality and effectiveness of healthcare. Under the National PROMs Programme, all NHS patients undergoing hip or knee replacement surgery are invited to complete a paper-based PROs questionnaire, once pre-operatively and once post-operatively.
What is the need for JointPRO?
Currently, the way in which PROs are captured and shared, limits the potential use of this information in alleviating the burden of osteoarthritis and other joint conditions:
-Established PRO questionnaires fail to consider individual patients’ concerns and aspirations. Whilst the result is a useful measure of surgical outcome for researchers, it is of little direct value to the people that matter most i.e. the patients themselves.
-The current nature of PROs questionnaires also results in a ‘ceiling effect’, which limits the sensitivity of the tool in assessing patient outcomes.
-The accuracy of PROs data often relies upon patients’ ability to recall historic information, and their lack of engagement with the process may compound any data inaccuracies.
-NHS PROs data is not available to clinicians, inhibiting its use at the point of care to support informed clinical decision-making.
-The true value of PROs lies in being able to capture changes in health over time, which is difficult to achieve with the paper based method.
-Results from paper questionnaires are scanned or manually entered into a database (at an estimated cost of £6.50 per patient), representing an unnecessary economic and environmental cost.
-Time-consuming, manual audits are required to analyse collected data.
-Such is the administrative burden of a paper-based system that routine collection of PROs in NHS patients with joint disease is limited to those undergoing hip or knee replacement.
Above all, at present patients themselves have limited access to their PRO scores, denying them a valuable opportunity to engage with their medical condition and treatment decisions. This represents a missed opportunity in the drive towards patient partnership, with its perceived benefits of better, less costly, and more effective care.
How does JointPRO address this need?
The development of JointPRO has been based on the success of social media in revolutionising the uploading and sharing of information. Patients’ self-reported health is evaluated using validated PRO instruments (Oxford Scores and EQ5D), in addition to a novel PRO instrument that has been developed in our lab. The latter is unique in allowing each patient’s personal aspirations to determine the success or otherwise of an intervention. This heightens patient relevance and sensitivity, as well as eliminating the ceiling effect associated with traditional scoring systems.
JointPRO encourages patients to login and score their self-reported health at regular intervals, pre- and post-operatively, so that changes in PROs over time may be reliably assessed. This quantifiable patient-reported information will be accessible in real-time to consented patients, healthcare professionals (HCPs) and researchers.
It enables patients to access and track their progress over time, whilst viewing their scores in the context of a patient-matched group and their own individual aspirations. This facilitates patient partnership with the medical team by providing a platform for patients to co-own their clinical episode - empowering patients to set personal aspirations, make treatment decisions, and direct their functional rehabilitation.
JointPRO provides HCPs with a valuable tool to support clinical decision-making and actively monitor their patients. Critically, it obviates the need for unnecessary clinic appointments, enabling targeted patient reviews. This is more convenient for the patient, yet maintains adequate surveillance at a time when the economic realities force clinical commissioning groups to restrict outpatient appointments.
Importantly, linking patient and clinical outcome data will allow researchers to explore factors influencing clinical effectiveness, thus informing future treatment, while continuous remote data collection enables rapid audit of any element of the care pathway.
Who is JointPRO for?
JointPRO is for patients with long-standing hip or knee pain, healthcare professionals and researchers.
How can JointPRO help me?
To find out how JointPRO can help you, click here
When was JointPRO developed?
JointPRO began evolving in 2010 and has since undergone several phases of development to enable us to refine its features to best meet the needs of our users. The current version of JointPRO was launched in November 2013.
1 Devlin N.J., Appleby J. Getting the most out of PROMs. Kings Fund publication 2010.
2 Black N. Patient Reported Outcome Measures could help transform healthcare. BMJ 2013
3 FDA 2006
4 Berwick D.M. Medical associations: guilds or leaders? BMJ 1997; 314: 1564