Partnership to Improve Patient Care

Thank you all for joining us here in our discussion on delivering patient-centered comparative effectiveness research in the United States.

I’m Tony Coelho, the chairman of the Partnership to Improve Patient Care.

PIPC is a coalition made up of more than 40 members representing patients, providers, people with disabilities, minority health advocates, researchers, innovators and other stakeholder groups.

Together we have worked – over the past 18 months – to support enactment of comparative effectiveness research that is centered on patients’ and providers’ needs.

And today, thanks to the tireless work of champions like Sen. Max Baucus and all of you in this room, we now have a unique opportunity to make this goal a reality.

The CER provisions of the health reform law are a win for patients, for providers, and for all Americans.

Thank you for joining with us in achieving this goal.    
 
But our work is far from over.

Now it’s up to all of us to support the successful implementation of these important provisions so that the research meets the needs of all patients.

And we need to focus especially those that are often overlooked such as people with disabilities, minority communities and the elderly.

I'm looking forward to an engaging discussion - with the speakers and the audience - about what this work entails.

I hope we also can step back and consider what this work means.

It’s easy to say we’re being “patient-centered” it’s much harder to do it. We owe it to all of the patients in America to translate patient-centeredness into practice.
 
Like outcomes research, the concept of patient-centeredness is not new. Some people define it as “nothing about me without me,” or the Mayo Clinic's maxim “the needs of the patient come first.”
 
To me, patient-centeredness in comparative effectiveness research means the research fundamentally is about vesting more power in individual patients and not taking it away from them.

Can we honestly say to patients “nothing about me without me” when we aren't giving the “me’s” a seat at the table where the decisions are being made?

Can we honestly say “the needs of the patient come first” when our research ignores the many differences in patient needs? 

Can we honestly say we care about the preferences of patients and their caregivers and family members, when our policies for communicating and applying research don’t leave room for these preferences?
 
The health reform law gives us a basis for answering “yes” to these questions.

It creates a new, independent Institute, the Patient-Centered Outcomes Research Institute, to oversee the research program.

Under the law, the Institute will focus CER on patients by including patients at every stage of the process.

First and foremost, patients will be represented on the Institute’s Board of Governors, along with a wide range of other stakeholders from the private sector and government agencies.

So for the first time we will have a meaningful voice in how the research questions get prioritized and answered.

The law also includes specific provisions to focus the Institute’s agenda on the needs of patients and providers, including a recognition that patients different.

There will also be full openness and transparency, and use of expert advisory panels.
 
 To me this is good policy, but it's also personal.

As an epilepsy patient for more than 50 years, I have learned firsthand the importance of having good information on which to base the medical decisions my doctors and I make together. 

I've also seen how important it is for doctors to be able to combine this information with their knowledge of the individual patient, and to work with them to decide on the best medical care.  
 
Comparative effectiveness research done right - done “patient centered” – is a tool that can be used to make this happen.  

 We all know from personal experience that every body is different. 

I have yet to meet the statistical average. Most of us live somewhere outside the curve.   

So we need to make sure that our research reflects these differences.

And when it spits out an answer, it needs to be an answer that matters to patients, and can be applied by us and our caregivers to our particular circumstances.   
 
This is not easy work.

Fortunately, the CER provisions in the Patient Protection and Affordable Care Act give us a head start.
 
I am very pleased to tell you that one of the principle architects of the new health care law will be here to speak with us today. 

Senator Baucus will be joining us a bit later to give us his perspective of the health care law – and how we best can move forward to ensure its implementation is patient-focused.

 I'm also pleased with the stellar line up of speakers on our panel this morning to speak on next steps in implementing PCORI.

We look forward to their insights as representatives of patients, physicians, minorities and people with disabilities.

All will provide insight on what must come next if CER is to be implemented by patient-centered standards, and serve to provide patients and doctors with the best possible information meant to improve health care outcomes.