PROximity: How to use RWE to gain insight into the mental health of HIV patients

About the collaboration

This project has been developed by the Hospital Universitario Puerta de Hierro Majadahonda in coordination with SERMAS (Regional health care authorities), DGSIES (Regional IT team), Madrid Digital (regional validation authorities for IT programs) and has the collaboration of Gilead Sciences and the endorsement of the Health Outcomes Pillar of SEDISA’s Observatory of Value-Based Health Management.  

The challenge 

The increased life expectancy of people with HIV implies ageing problems associated with an increased prevalence of comorbidities and an increased risk of adverse events. A specific clinical management model is needed based on health outcomes, clinical and functional status, treatment monitoring and assessment of the impact of the pathology and its determinants from the patient’s perspective.  

The solution

The electronic health record (EHR) based non-standardised data makes it difficult to generate evidence and debate among professionals to import best practices. In addition, the Patient Reported Outcomes (PROs) tools are difficult to manage in daily clinical practice. For this reason, the Hospital Universitario Puerta de Hierro Majadahonda has developed, together with HOPES (a brand from LOGEX), the platform under the name “PROximity project”.

HOPES incorporates through PROximity the patient voice and value-based healthcare into the care process, detecting problems that are exposed in a structured and validated way for patients with HIV, significantly improving health outcomes.  

The full interoperability between the platform and the different hospital providers offers the clinical team a patient viewer, fed by the information that travels through the hospital’s internal messaging, showing the graphical evolution of clinical parameters and PRO scores. In addition to the patient viewer, the platform provides cohort dashboards that offer real-time information about the hospital’s population, giving the clinical team complete and holistic knowledge about the status of the cohort.

This is an actionable solution to reduce interhospital variability by using Real World data, optimising care pathways and improving patients’ perceived quality of care. 

The approach

During a period of a year, a prospective randomised study with 100 patients (50 for the study and 50 as the control group) will take place. Here, 8 areas that impact the quality of life (QoL) are being measured with the newly developed PRO Clinical Screening Tool (CST), developed by the Spanish Interdisciplinary AIDS Society (SEISIDA) and ISGlobal. The areas studied are depression, cognitive problems, sleep problems/fatigue, physical symptoms, stigma, sexual satisfaction, perceived social support and material deprivation. The project also measures the QoL through the PRO WHO-QoL bref.   

This new model harmonises Real World Data from a different scope. In order to achieve the new model, it is combined: 

• Participation of the patient in their care process by getting them to contribute with their perspective with a validated methodology.  
• Interoperability between hospital systems and the HOPES platform for the collection of CST and WHO-QoL bref results.  
• Implementation of alerts based on CST and laboratory results  
• Coordination and multidisciplinary work  

PROximity study outcomes 

A coordination of efforts and multidisciplinary work between medical, pharmacy, nursing and IT departments allowed the full interoperability between the HOPES platform and the hospital EHR, pharmacy and clinical analysis providers. The digitalisation of care helped the combination of information for patients and the cohort as a whole.   

The study enabled the rescue at a retrospective level of 960 patients monitored on the platform and integration with more than 100,000 prescriptions and more than 36,000 laboratory analyses, enabling patient follow-up since the hospital opened in 2008.  

Standardisation and integration of this data will increase knowledge of actual clinical practice in HIV patients with an initial focus on mental health and sleep disorders, which are highly prevalent in this population.  

Impact

The integration of PROs, together with a collaborative and multidisciplinary approach in the care pathway, will contribute to the detection of unmet patient needs, as well as to the adjustment of interventions. The implementation of alerts will contribute to early action in the face of changes in the patient’s situation.   

PROximity is aligned with European health policy and programmes that promote quality of life and equity in access to HIV care through digitalisation. Digitalisation and IT integration will help to put the patient at the centre of the care process.  

Early results show that patients suffer some challenges in the mental health arena: almost 70% of patients have sleep impairment or fatigue, and nearly 40% have manifested mental health problems related to depression and cognitive impairment. 

A network of hospitals is starting to measure the same parameters. This will enable the option to detect and share the best practices and propose care pathway improvements. 

About the authors

Rubén Roldán Blay
Project coordinator at HOPES

ruben.roldan@hoh.es