What about me? Patient-Centred Outcomes Research

Posted by on May 23, 2012 in Articles | 0 comments

Shirley draw
Do you have all the information that you need to help your patients make important health decisions?

There are four key questions that a patient will want answered.

“Given my personal characteristics and my clinical characteristics, what can I expect will happen to me?”

“Given my personal characteristics and my clinical characteristics, what treatment options are available to me and what are the relative benefits and harms of each?”

“Given who I am, what behaviours — what can I do — to see that I achieve the outcomes that I prefer?”

“Given who I am, what can the healthcare system do to support me in gaining the information and making the decisions that I need to make to obtain the outcomes that I prefer?”

In any consultation, sometimes the answers will be available in the existing literature. Sometimes they may be be answerable if we synthesized a wide range of evidence that’s out there already. Or “We may need to study different outcomes to answer these questions; or we need to study different comparisons; or we may need to study the same question in a different, broader patient population”.

So says Dr Eli Adashi, in his new role as head of the Patient-Centered Outcomes Research Institute, in an interview published on Medscape today.

Patient-centered Outcomes Research is done ‘in collaboration with patients and allows the patient’s voice to be heard as specific questions are asked and addressed’. The Institute was established as part of the Obama Health Reforms in the ‘Affordable Care Act’. Its mission is to fund research that offers patients and caregivers the information they need to make important healthcare decisions.

The PCORI focuses on comparative clinical effectiveness research, studies that compare options for preventing and diagnosing disease and providing treatment and care. and seeks to answers these questions that are important to patients. (We have previously discussed our need in primary care for POEMS – Patient Orientated Evidence that Matters)

The Institue has some aims in common with the Cochrane Collaboration, in that it will synthesise existing information. However, it will have an increasingly important role in funding research where there is a gap in the evidence.

On Monday this week, the PCORI determined its five priority areas for research.

    1. Assessment of Prevention, Diagnosis, and Treatment Options
      Comparing the effectiveness and safety of alternative prevention, diagnosis, and treatment options to see which ones work best for different people with a particular health problem.


    1. Improving Healthcare Systems
      Comparing health system-­level approaches to improving access, supporting patient self-­‐care, innovative use of health information technology, coordinating care for complex conditions, and deploying workforce effectively.


    1. Communication and Dissemination Research
      Comparing approaches to providing comparative effectiveness research information, empowering people to ask for and use the information, and supporting shared decision-­‐making between patients and their providers.


    1. Addressing Disparities
      Identifying potential differences in prevention, diagnosis or treatment effectiveness, or preferred clinical outcomes across patient populations and the healthcare required to achieve best outcomes in each population.


  1. Accelerating Patient-­‐Centered Outcomes Research and Methodological Research.
    Improving the nation’s capacity to conduct patient-­‐centered outcomes research, by building data infrastructure, improving analytic methods, and training researchers, patients and other stakeholders to participate in this research.

WIth direct funding from US Treasury plus a $1 levy on every insured person, the Patient-centered Outcomes Research Institute will soon have a budget of more than $500 million annually.

It wants to distribute $120 million in funds to researchers right now.

What clinical questions would you like to answer?

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