In recent years, there has been a shift away from the conventional models of care delivery to a patient-centered approach which places the individual receiving care at the center of the healthcare ecosystem(1). This is because clinicians have recognised that high-quality clinical care necessitates patients to provide information pertaining to their feelings, their symptomology, and the effects of the care management pathways they have undertaken. In 1989, The Medical Outcomes Study was designed and conducted to investigate whether variations in patient outcomes could be accounted for by differences in healthcare systems, clinician specialty, clinician interpersonal style or clinician expertise(2). Even 30 years ago, researchers were interested in developing feasible tools for the routine monitoring of patient outcomes in clinical practice. Since the results of this study were published, there has been an adoption of a focus on patient outcomes in the pharmaceutical industry – these are termed as patient-reported outcomes (PROs)(3). There has also been a collective interest in validated and evidence-based measures of patient-reported experiences – these are termed as PREMs.
The widespread interest in PREMs and PROMs could be attributed to a pivot-shift towards value-based healthcare. In 2010, the Harvard Business School economist Michael E. Porter stated that “Value should always be defined around the customer, and in a well-functioning health care system, the creation of value for patients should determine the rewards for all other actors in the system. Since value depends on results, not inputs, value in health care is measured by the outcomes achieved, not the volume of services delivered, and shifting focus from volume to value is a central challenge”(4). Subsequently, Michael Porter, Stefan Larsson and Martin Ingvar founded the ICHOM to create a global standard for measuring results by medical condition, from prostate cancer to coronary artery disease.(5)
A PRO is directly reported by patients without intervention by clinicians and relates to the patient’s health, overall quality of life and functional status that is associated with healthcare or treatment(6). PROs can be measured in absolute terms – for example, a patient could articulate the severity of their pain using a pain-score, also known as the Numerical Rating Scale (NRS)(7). PROs empower patients to be heard and enable their outcomes to be quantified and measured against normative data spanning diverse and heterogenous domains such as physical function, mood, fatigue and pain amongst others(8).
The utility of PROMs is best illustrated with an example from oncology – a field that is highly complex and varied in terms of the diseases managed by clinicians. A novel chemotherapeutic drug may demonstrate robust clinical outcomes in terms of improving patients’ length of survival. However, PROs as measured by PROMs could reveal that patients are non-compliant with the prescribed chemotherapeutic regimen because of a bevy of adverse side-effects and a poor quality of life. The measurement of PROs enables investigators and clinicians to assess the effectiveness of medical interventions (a drug, in this example) from many dimensions, including the patients’ functional status, satisfaction and quality of life most importantly.
PROMs are a form of validated self-reporting instruments which leverage patients’ views and opinions in order to assess their health status and overall wellbeing(9). These standardised instruments capture patients’ views, feelings and experiences and value-add to the clinician’s perspective of the patient’s holistic state by measuring changes in their health status and quality of life. In the early 1990s, PROMs had three main uses in clinical practice – enhance knowledge of disease trajectories, evaluate the effectiveness of treatment, and assess the quality of care being provided(10). Today however, PROMs are being routinely used across a wide range of health services to improve care, specifically, patient-centred care (PCC). Data obtained from PROMs are used not only by clinicians, but by healthcare administrators as well – these data are invaluable in providing insights into the effectiveness, appropriateness, and acceptability of various therapeutic modalities (i.e. medical, surgical and psychological), and the impact of these interventions on patients’ physical and psychological wellbeing, their functional capacity and quality of life(12).
Examples of routinely used PROMs are the EuroQol (EQ-5D) (12) and the Hospital Anxiety and Depression Scale (HADS) (13)
In order to identify where improvements in patient experience are needed, and to evaluate how successful efforts to change the patient journey or operational workflows have been, one meaningful way to capture what exactly happens during a care episode is to analyse PREMs. PREMs are defined as a measure of a patient’s perception of their personal experience of the healthcare they have received(14). Similar to PROMs, PREMs are questionnaire-based instruments which require patients to report on the extent to which certain processes occurred during any relevant episode of care(15).
For example, a patient who makes a visit to the emergency department for acute pain could be asked to indicate if they were offered pain relief during this episode of care and the meaning of the encounter (i.e. satisfied, dissatisfied etc.). PREMs have been in widespread use since the early 2000s – the Picker Institute developed the National Inpatient Survey for use in the United Kingdom’s National Health Service (NHS). This particular PREM is disseminated to a sample of 1,250 adult inpatients who have had an overnight admission in a trust during a specific timeframe. The results of this PREM are used by the NHS to improve performance and the quality of service provision, as well as to measure progress and evaluate outcomes.
There are several examples of PREMs which are in routine use today. Examples include the Accident and Emergency Department Questionnaire (AEDQ)(16), the National Inpatient Survey, the navigated transcranial magnetic stimulation (nTMS) -PREMS(17), and the Consumer Assessment of Healthcare Providers and Systems (CAHPS) PREMS(18) amongst others. In truth, any questionnaire which captures what happened during an episode of care, together with how it happened from the perspective of the patient, can be construed as a PREMs instrument.
PREMs are distinguished from PROMs. This is because PROMs seek to measure a patient’s health status and patient satisfaction measures; these satisfaction measures have been criticised as being too significantly influenced by previous healthcare encounters(19). PREMs have been gaining attention as indicators of healthcare quality and as instruments which are capable of providing information regarding how PCC-centric existing services are, as well as areas for improvement within healthcare delivery. In recent years, PREMs have been used to inform pay-for-performance and benchmarking schemes, together with other health quality domains such as health information technology and clinical quality and effectiveness(18).
PREMs are not without their limitations, however. First, PREMs are synonymous with patient satisfaction and patient expectation – both are subjective elements which could be reflective of the adequacy of healthcare as opposed to the quality of healthcare. Second, PREMs may be confounded by factors not directly associated with the quality of healthcare, such as health outcomes. Third, PREMs could be reflective of patients’ underlying healthcare expectations and visions for an ideal healthcare experience, as opposed to their actual care experience(20).
PROMs enable clinicians to gain insights from the perspectives of patients into how aspects of their health and the impact of disease and treatment are perceived to be having on their lifestyle and quality of life. PROMs are beneficial as they support objective parameters which are readily obtained by clinicians. As an example, the progress of diabetes treatment could be evaluated by a HbA1c value and the progress of asthmatic treatment could be evaluated by a peak flow rate measurement (FEV1/FVC) – these are both objective parameters which are continuous in nature. However, PROMs could evaluate the diabetic and asthmatic patients’ social activities – restrictions on these activities as a result of fear of sustaining a hypoglycaemic episode or an asthmatic exacerbation could impinge upon their quality of life. These perceptions are not captured by objective parameters (i.e. HbA1c and FEV1/FVC) alone.
Despite the limitations of PREMs which stem from their subjectivity, they have gained international recognition as an indicator of healthcare quality. This is because PREMs enable patients to holistically reflect on the inter-personal elements of their healthcare experience, they can be used as a common measure for public reporting and benchmarking of institutions and healthcare plans, and they can provide patient-level information which is useful in driving service quality improvement strategies(22,23). With an increased interest in performance measurement for management and governance purposes within complex healthcare systems, PREMs represent a viable and robust solution for evaluating process measures and assessing quality of care(24).
While PROMs and PREMs have traditionally been sourced directly from patients through structured questionnaires in the form of paper forms, there has been a shift towards the electronic capturing of PROMs and PREMs via touchscreen devices such as mobile phones and tablets(25).
Getting started with PROMs and PREMs can be challenging. This is because the e-health ecosystem in the inpatient setting is characterised by electronic health records (EHRs) with hundreds of interfaces with 3rd party applications, operational complexities in the form of interconnecting workflows involving several allied healthcare personnel and ambiguous and unstructured clinical documentation.
Novel solutions are being developed to address these challenges. One such solution is RemeCare, a remote patient monitoring health application which seeks to guide patients with their medication intake and monitor them for the development of adverse effects during their treatment. RemeCare integrates a patient-physician communication channel for seamless correspondence and sends patients timely reminders for medication intake. RemeCare’s machine learning algorithms prompt healthcare providers to the development of adverse effects in their patients.
RemeCare offers clinicians the flexibility of obtaining vital PROMs and PREMs from their patients who have been on-boarded onto the remote monitoring solution. Pre-designed generic or disease specific (e.g. breast cancer) questionnaires could be prescribed to patients on a pre-specified schedule to monitor their outcomes and experiences with treatment. For example, a patient with Stage II breast cancer who is commenced on neo-adjuvant chemotherapy could be monitored with RemeCare for the development of adverse drug reactions. However, this monitoring could be enhanced by integrating ePROMs in the form of questionnaires which evaluate health-related quality of life and functional capacity by asking the patient about fatigue, anxiety, fear, physical functioning, satisfaction with care and adherence to prescribed therapy.
After the patient’s in-clinic visit, ePREMs could be scheduled via the RemeCare solution in the form of questionnaires which evaluate the patient’s satisfaction with the clinician, satisfaction with the waiting time and para-clinical staff, quality of communication, support to manage the long-term condition, and access to and ability to navigate services.
RemeCare provides a golden opportunity to healthcare institutions to embrace ground-breaking technology and realising the vision of personalised medicine in a volatile, uncertain, complex, and ambiguous world. We endeavour to identify the pain-points in the patient journey in order to achieve a safer, more effective, highly personalised and satisfying clinical experience for both patients and healthcare providers alike.