What is patient centered care?
The IOM (Institute of Medicine) defines patient-centered care as: “Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.” The International Alliance of Patients’ Organizations notes that “the essence of patient-centered healthcare is that the healthcare system is designed and delivered to address the healthcare needs and preferences of patients so that healthcare is appropriate and cost-effective.”
Over the past decade, there has been a growing trend toward using a patient-centered approach to healthcare and healthcare delivery. Studies have shown this can help people communicate more effectively with their healthcare team, and participate in making decisions about their medical care. PCOR includes individual preferences and needs, and addresses things that people notice and care about such as symptoms, how well they can carry out day to day activities, how their illness and treatment affects their overall quality of life and includes the patients voice when understanding the value of different health care options.
Patient Centered Outcomes Research (PCOR)
Patient-Centered Outcomes Research (PCOR) is transformation of traditional clinical research in an effort to also focus on the things that matter to patients with chronic conditions. Over the past decade, there has been a growing trend toward using a patient-centered approach. Studies have shown this can help people communicate more effectively with their healthcare team, and participate in making decisions about their medical care. PCOR includes individual preferences and needs. It also addresses things that people notice and care about such as symptoms, how well they can carry out day to day activities, how their illness and treatment affects their overall quality of life and includes the patients voice when understanding the value of different health care options.
Examples of PCOR studies include things that may:
- Compare the benefits and harms of various treatments and even services to learn which treatment works best for whom
- Examine outcomes that matter most to people living with chronic illnesses
- Improving communication between patients and doctors to help match patients to the best treatments
- Combining data from many similar studies to find new answers
- Creating ways to involve a broader range of stakeholders in the research process including clinicians, consumers, policy makers, insurers and others
Many current research studies report how a treatment affects a biological outcome or survival. These outcomes may be a laboratory or diagnostic test. Sometimes the outcome is something measured by the physician or other health care provider. These types of biological and provider-based outcomes focus on the disease process, and are often used to determine if a treatment is effective or not. Health care providers use these outcomes to guide them in decision making within the clinical care setting.
In rheumatoid arthritis (RA) care, an example of a biological outcome is the C-reactive protein (CRP), erythrocyte sedimentation rate (ESR, Sed Rate), or the number of erosions seen on an X-ray. An example of provider-based assessment is the number of swollen joints recorded by an assessor.
These biological and provider measured outcomes have helped to establish treatments that improve the disease process. Sometimes these types of measures reflect the symptoms and parts of a disease that patients experience. However, they often do not reflect what parts of living with a disease are most important to the people who live with the condition.
There is a growing awareness that more focus is needed on outcomes that are of direct relevance to the patient. This will help to best evaluate the overall effectiveness of a treatment for an individual patient.
