1. Healthcare staff motivation and enthusiasm to collect PROMs to inform patient care are huge drivers.
2. A PROMs collecting platform must be easy to use for both the patient and the care team – participating in PROMs should not be a challenge.
3. A digital method of collecting PROMs should integrate into the existing electronic health record system of the user to allow for the flow of information. This is much more efficient than paper!
Over the past number of years, the scientific and medical communities have acknowledged that Patient Reported Outcomes (PROs) have a role to play in how we execute healthcare today and in the future. A universal consensus has developed that Patient Reported Outcome Measures (PROMs) can act as a pivotal tool for the evaluation of health services. Furthermore, aggregated measurements of PROs for defined patient cohorts have the power to be the main players in the patient-centred quality improvement of care.1
However, if PROMs are to achieve this, it will depend on how effectively they are employed at the level of the individual patient and how they impact everyday clinical decision-making. Potential challenges that may have hindered the adoption of PROMs in some clinical settings may be due to attitudes amongst care teams that PROMs are a disruption to the clinical workflow and the lack of longitudinal data readouts. Skepticism exists whether PROs truly add value to clinical practice. Moreover, a lack of specialised training and enthusiasm for PROMs amongst on-the-ground healthcare staff can hinder success as they are the powerful force who care for the population.1 The everyday clinic is where PROMs can suffer the most under-utilisation. However, it is an area where it could have substantial benefit if patient data collection is optimised!
In a 2017 study published by Rotenstein et al., on the implementation of PROMs as part of routine clinical care in a radiation oncology department; clinician interest was noted as being a contributor to the implementation of PROMs. The paper emphasised that “physician buy-in was key to successful PRO implementation. Implementation was least successful when physicians did not find PROs valuable or did not feel they had time for them”. This makes sense. If those who are the custodians of patient health do not see the value in an exercise, they simply will not adopt it as part of their daily practice. Evidence from an investigation into provider perspectives on the integration of PROs, noted that despite sufficient training on how to administer PROs, staff did not understand the benefits of routine implementation.
This lead to physicians being unable to fully explain the benefits of PRO assessment on health and thus patient participation can fluctuate.2 Training on how to use a PROMs collection tool is not enough of an education to encourage PROMs leadership, training on the validity and value of PROMs is paramount to success.
Having an easy to use interface from the perspective of the doctor and patient are crucial components in introducing a PROMs tool for the clinical everyday. When designing an appropriate digital platforms not all users will be as familiar with using such technologies, therefore showcasing an interface where actions are clear and effortless are factors to consider to encourage the software’s success. Seemingly small factors such as contrast and text font size are necessary to be conscious of for older patients or for those with vision difficulties.3
If a screen contains too much information, it can be confusing. If the colours of the screen are too bright, it can be tiring to use. Making the patients’ and doctors’ experience of a PROMs tool should be as straightforward as possible and the considerate, sensitive design of a patient questionnaire interface is imperative to optimising engagement. Deriving information from the patient feedback provided from the questionnaires should be accessible to care teams via limited clicks through their designated access logins. Displaying the key data longitudinally and in real-time should be a priority in the system’s design for care team use.
If a digital system is easy to use and efficient in asking concise question sets, it has a better likelihood of encouraging patient participation. Let us not forget that patient engagement is one of the focal points of PROMs success. A 2015 study highlighted the importance of introducing electronic PROMs before scheduled medical visits to increase engagement figures and enable PRO collection to become part of the “norm” when accessing healthcare.4
For a PROMs collection programme to be as effective and insightful as possible it should slot into the electronic health record system of the clinic seamlessly or through the integrated digital platform of the service in question. A system that allows the flow of information gathered by PROMs allows different members of care teams to be aware of the outcomes collected and consider this data when caring for their patients. This transfer of information can run more smoothly through the means of electronic-PROMs collection in comparison to the more traditional paper-based collection of data. In a report from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) PRO Mixed Modes Task Force, they list a myriad of advantages of using an electronic PROMs collection.
Amongst the advantages mentioned were the “avoidance of secondary data errors, easier implementation, electronic reminders and alerts as well as more accurate and complete data”.5 Criticism of paper-based PROs focused on the cumbersome nature of the lengthy print-outs that are difficult to interpret for both care teams and patients, which ultimately leads to a lack of participation.6 In the United Kingdom, it was found that more than 25% of NHS post-operative paper questionnaires are not completed, which may skew or invalidate the measures collected.7
In a report from the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) PRO Mixed Modes Task Force, they list a myriad of advantages of using an electronic PROMs collection. Amongst the advantages mentioned were the “avoidance of secondary data errors, easier implementation, electronic reminders and alerts as well as more accurate and complete data”.5 Criticism of paper-based PROs focused on the cumbersome nature of the lengthy print-outs that are difficult to interpret for both care teams and patients, which ultimately leads to a lack of participation.6 In the United Kingdom, it was found that more than 25% of NHS post-operative paper questionnaires are not completed, which may skew or invalidate the measures collected.7
In Wales the national PROMs, PREMs and Effectiveness Programme is supporting all NHS Wales organisations to collect PROMs and PREMs across a range of specialities. They provide national insight into the effectiveness of treatments provided by NHS Wales. To date they have built and began the roll out of a collection tool to allow at-home and in clinic collection of PREMs and PROMs across NHS Wales.
The initiative has established an interface with patient administration systems to enable automated longitudinal collection of PROMs and PREMs in accordance with nationally agreed condition specific pathways. A dedicated website has been developed to serve as an information source and platform for patients to complete questionnaires at home or on their own devices.8 This effort began in 2016 so longitudinal data on the results of this initiative may hold promise.
Meanwhile, NHS England has provided a promising example of PROMs being successfully implemented to provide long-term follow up for cancer survivors.9 However, disputes remain over the true utility of PROs as the widespread accumulation of evidence remains challenging.
The benefits of PROMs have been documented and the true potential of this form of patient data collection will remain in its infancy or only in forward-thinking specialised centres unless daily widespread PROMs adoption occurs. Such a development will not radically alter the normal clinical routine, collecting PROMs digitally through an automated software is designed to fit into the activities of a clinic. PROMs collection should accommodate the user and not the other way around!
The coming years hold exciting potential for the use of PROs in routine clinical practice as technology and the integration of healthcare services are set to advance considerably. For example in the UK, integrated care systems are evolving as a collaboration between NHS organisers and local councils to take collective responsibility of resource management and they delivery of NHS services tailored to the population they serve.10 Interwoven healthcare establishments of the future would aid PROMs implementation through a shared pool of information.
By establishing sufficient linkage between the interpretation of PROMs scores with clinical decision making in combination with the factors above PROMs can take its place as part of the clinical everyday! Heartbeat has acknowledged what factors help PROMs to become a reality in the clinic. We have designed our PROMs collecting software Heartbeat ONE accordingly, to place PROs at the heart of clinical decision making and to guide the treatment of the individual and the wider patient cohort.