partners patient research portal

Why partner for medical research?

Researchers at Partners are at the forefront of ongoing research activities in drug discovery, genetics, clinical patient care, diagnostics, information technology and preventive medicine.

What is the research patient data registry?

The Research Patient Data Registry (RPDR) is supported by the dedicated team of nearly a dozen developers and support personnel. RPDR is the centralized clinical data registry/warehouse directed by Research IS & Computing‘s Director, Shawn Murphy, M.D. PhD.

Why is patient-centred research important?

When researchers are open to this, the view of the patient can steer the direction of the research, reveal overlooked issues, influence study design – and, crucially, ensure that the outcome is patient-centred.

What is patient involvement in research?

Patient involvement in research, also known as Patient and Public Involvement (PPI), is increasingly recognised as a valuable part of healthcare research. Rather than ‘for’ or ‘to’, research is now ‘with’ or ‘by’ the patient.

What is patient involvement in research?

Patient involvement in research, also known as Patient and Public Involvement (PPI), is increasingly recognised as a valuable part of healthcare research. Rather than ‘for’ or ‘to’, research is now ‘with’ or ‘by’ the patient. In PPI, patients are treated as research partners rather than simply recipients.

What is PPI in clinical research?

Modern clinical research often includes Patient and Public Involvement (PPI), in which patients play an active role in the research process. While the benefits of PPI are well recognised, little attention has been given to the challenges researchers face in implementing it. Recently, Professors Mogens Hørder and Marie Konge Nielsen of the University of Southern Denmark set out to discover the challenges researchers face in PPI, the effect of PPI on the research process, and, crucially, the support researchers need in order to achieve the full potential of patient involvement.

What support do researchers need?

What support do researchers need?#N#It is clear that there is no ‘one-size-fits-all’ approach to incorporating PPI in a project. However, there are a few common factors that are important in successful PPI – and institutions should ideally have the proper support in place to allow researchers to address these points. First, patients should be involved at an early stage in the research process. This allows patients to understand and influence the aims of the project at the planning stage. It also enables them to have a sense of ownership over the work. Second, researchers should ensure that patients understand how and why their contribution is valuable. If addressed properly, these factors will strengthen the collaboration between patient and researcher.

How does PPI impact research?

There is no single answer to this question. PPI will impact the research process of each project in a slightly different way. Nevertheless, PPI will likely reveal new issues or problems to consider – and perhaps solutions to investigate by research, as well.

Why is it important to have a role description in a PPI?

While the researcher leads the project – and takes overall responsibility – it is important that the roles of each participant are clearly defined. This should be done as early in the project as possible, so that realistic expectations can be set. With the support of their institution, researchers could even consider written ‘job descriptions’ for both themselves and patient participants in order to clarify roles. Another possibility is for researchers experienced in PPI to guide and mentor those who are new to the task.

What is PPI in research?

PPI represents a relatively new way of working. As such, some institutions may not have the right support in place for researchers to make best use of PPI. Project leaders may need guidance on how to involve the patient.

What is PPI in healthcare?

In PPI, patients are treated as research partners rather than simply recipients. The patient’s perspective on the research process is invited and can influence the direction taken by the research. Living with the condition being studied allows patients to offer unique and personal insights at all stages of the process, from planning and design of the study to communicating the results.

Project Summary

Patient Outcomes Research To Advance Learning (PORTAL) is a new network that brings together four leading healthcare delivery systems: Kaiser Permanente, Group Health Cooperative, HealthPartners, and Denver Health.

Key Dates

Includes the research project period and may be subject to modification to allow other research-related activities such as peer review.

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