Engaging Patients in Research on HIV and Aging in the Hudson Valley
By ETE Dashboard |
December 22nd, 2016 |
In the Hudson Valley of New York, an exciting partnership is underway called the Collaboration on HIV and Aging Research-Hudson Valley (CAHAR-HV). CAHAR-HV is led by HRHCare, and made up of a diverse group of stakeholders of patients, providers, government agencies and researchers – all fully committed to developing projects that improve the care for older individuals with HIV. CAHAR-HV began as a collaborative in April 2015 with a Pipeline to Proposal Award from the Patient Center Outcomes Research Institute (PCORI). One of the aims of CAHAR-HV is to use PCORI seed money to develop a feasible scaled-up PCORI study on an issue pertinent to HIV and aging. The study will be – and this is important - grown from the ground up. This means that everyone involved in CAHAR-HV has a say in what the research is, and how it is conducted. Why have we come together? Population Needs: While it’s amazing that individuals with HIV can live long and productive lives, the reality is that aging with HIV can be filled with challenges. Individuals aged 50 and older with HIV appear to have a higher rate of having two or more chronic conditions including cardiovascular disease, cancers, renal disease, osteoporosis, liver disease, and neurocognitive disorders. Further, our colleagues at ACRIA found that individuals aging with HIV often have weaker social networks, fewer social supports, and higher rates of depression. System improvements: It is imperative that health and social care systems respond to the needs and vulnerabilities of this population. This will mean that more and varied health and social care providers will need to be involved and work together to meet this population’s needs. However, we know that coordinated health management can be challenging, particularly in rural and semi-urban areas like the Hudson Valley, where services can be harder to access and linkages between services more difficult to attain. Relevant research needs many voices from different viewpoints: Everyone has something to contribute and learn – from patients who have a bird’s eye view of service issues, and also some burning questions that they would like research to answer; to providers who know the healthcare system by working in it every day and an understanding of feasible projects; to government agencies that want to make improvements that help as many individuals as possible; to researchers who know how to test questions in a way that gathers new knowledge about what works, how, and for whom. Together, we can come up with terrific, relevant patient-centered research for people who are aging with HIV for PCORI and beyond!