PROs: healthcare seen through the eyes of the patient

Patients are in the best position to evaluate the quality of the healthcare they receive: this idea has broad consensus today. In fact, the principle of patient-centric care takes concrete form thanks to the combination of the active involvement of patients in the entire treatment process together with their feedback on the services they receive.

Patient-centric is ever more vital in the healthcare field, at both a national and European level, and an essential component of this principle is the patient-reported outcome (PRO). This is a report on the health of the patient - given directly by the patient – without any interpretation by the clinic. PROs are increasingly being used as invaluable sources of data in various healthcare sectors. These reports focus on information relating to specific symptoms that the patient experiences, reflecting her physical and psychological state, as well as her satisfaction and the effectiveness of the care she received during treatment, whether in- or out-patient.

PROs are becoming more common, and the integration of these reports with other information and with improvements in data analysis give rise to an exceptional opportunity to put the patient at the center of any healthcare process. Nonetheless, there are a number of issues that public decision-makers need to address to use PROs in an appropriate fashion. These include: interoperability, data security, and patient privacy.

A recent study provides a snapshot of the current status of PROs, how these tools are measured, and how they’ve been used so far. The analysis then shifts to applications for PROs in the near future.

PRO is a generic term that classifies a series diverse concepts linked to patients, including first-person reports on their health and evaluations of the care they’ve received. But not all medical or therapeutic information provided by patients constitutes a PRO. For example, demographic data, drug therapies and personal/family medical history are all excluded. Instead, the outcomes given by patients in ad hoc questionnaires (patient-reported outcome measures (PROMs)) are invaluable data sources that can inform a vast range of domains in healthcare: from clinical studies to guidelines, from healthcare management to relevant regulations to decision-making processes on healthcare coverage and reimbursements.

For example, the Functional Assessment of Cancer Therapy - General (FACT-G) is a questionnaire that is widely used to evaluate the quality of life of patients receiving cancer therapy. The latest version contained 27 questions regarding the physical, emotional, and functional wellbeing of the patient. PROM can be categorized as specific (for a given disease), generic, static, or dynamic (with questions that are adapted to the individual patient).

By combining purely clinical information with a more general evaluation by patients, PROs give a complete picture of their physical and mental health, and encourage dialogue between patients and healthcare providers with the aim of arriving at a shared treatment plan that is the best fit for the individual patient. This is a particularly salient aspect because patients and physicians do not always agree on how to prioritize outcomes. PROs also enhance patients’ awareness of their conditions and increase the public responsibility of healthcare workers, who are more attentive to the needs of the patient/citizen.

In recent years, the use of PROs in clinical research has increased substantially (around 85% of the cancer studies on the ClinicalTrials.gov portal, a database that collects studies from all over the world, incorporate some for of PRO). But the dissemination of PROMs in clinical practice is far slower and more fragmented, as reflected in the fact that there are few centers of excellence, located primarily in the US, England and Denmark. In these countries, programs have been activated for some time that monitor the satisfaction and psycho-social wellbeing of patients, providing auxiliary services for those who suffer from depression and anxiety.

At an organizational level, various countries have launched initiatives to promote the use of PROs as the basis for measuring performance by healthcare service providers. On a broader level, these reporting processes can be used for regulatory purposes, such as issuing approval for the sale of pharmaceuticals, assessing healthcare technology, or granting healthcare reimbursement.

Healthcare policy that promotes PROMs on a large scale is fundamental to advance a standardized, continuous and integrated assessment of these data in clinical research and daily medical assistance. Interoperability, governance, data security and patient privacy are all issues that must be addressed by aggregating the data collected at a local, regional and national level.

Digitalized medical records, administrative data, public health record, biometric sensors, mHealth applications and numerous other data sources can be integrated and utilized to improve data collection, analysis and presentation – and all of this to the benefit of the patient.

In the not-too-distant future, narrative accounts that describe doctors’ visits with their patients will be automatically converted into standardized PROMs that can be reutilized by other healthcare facilities, where services and procedures will be driven by the preferences, needs and health outcomes of patients.