Partnership to Improve Patient Care

Below: PIPC Chairman Tony Coelho's recent speech on patient centered CER. The speech was delivered on Tuesday, June 22, 2010 at the Alliance for Specialty Medicine's “Capitol Hill Advocacy Conference,” in Washington, D.C.

Thank you for that kind introduction.  

It’s nice to be here.

For those of you from out of town, welcome to Washington. 

As a former Congressman, I want to applaud your personal commitment to public policy. 

One of the truly great aspects of our nation’s democracy is the citizens’ right to speak to their elected officials – face to face – and tell them how they can better represent their interests.

And that you’re participating in that important process shows that you take your responsibility as an American seriously.

I also want to thank you for your service to your patients – to helping make us all a healthier America.

As you may know, I have epilepsy.

My epilepsy was a result of an automobile accident I was in at the age of 15.  And growing up in a rural farming town in the 1950s I saw, firsthand, what patients in underserved communities experience when they’re trying to find treatments for an uncommon disorder.

My family’s physician – although he was a nice man – was a general practitioner. 

He didn’t have the training or know-how to adequately care for a patient with seizures. 

At that time, the lack of medical information and training led to a lot of confusion about how to best treat me – and even led me to a see a couple of witch doctors.

Naturally, my epilepsy affected every facet of my life as a teenager, and it eventually led to my expulsion from Catholic seminary at 21, which sent me into such a downward spiral of depression that I attempted suicide later that year.

It wasn’t until I started seeing a specialist that I was able to finally get my seizures under control. 

And although I still have seizures – they are more infrequent – and more manageable today than ever before. For that, I thank new advances in medicines and specialty doctors, especially, my neurologist.

He monitors me all the time. 

And he is constantly working with me to determine the underlying causes and triggers of my seizures.  He asks what I think about, what I dream, and what personal and professional pressures I’m under.

He also constantly checks my medication and he reviews the current medical literature and research to ensure that my course of treatment is effective as possible. 

Over the course of my life, I’ve taken more than a dozen different drugs for my epilepsy. 

One will work for a while, then my body will build up immunity to it and it will become ineffective.  So, my doctor has to adjust it.

But also, I’m an active participant in my care. 

I, too, am constantly reviewing the available medical information and taking notes about how I’m feeling so I can share that with my specialist when we talk.

Over the past half-century, since I had my first seizure, there has been a tremendous improvement in the way seizures are treated. 

Naturally, today we have better technology, better testing, more information, new, better and more diverse medicines, and highly skilled specialty doctors – like all of you – to help patients get healthier. 

And, frankly, in large part thanks to highly trained specialty doctors, disabled Americans like me have been able to come out of the shadows and live more active, productive lives. 

But we cannot rest.  I know that the next 50 years will bring even greater advances than the past 50. 

And one sector of the health care field that can help ensure medical advances reach the patients that need it is patient-centered comparative effectiveness research, or CER. 

If used properly, CER will help provide patients and their health care providers with the best possible course of treatment.

And CER will become even more important as the medical community moves into the world of increasingly personalized medicine.

I like to say that everybody is different. 

And while medical studies over the past several generations have tended to find the best treatments for the average patients – most of us fall outside the curve. 

We may have different reactions to similar treatments or hold different values. And honestly, what works for one patient may not necessarily work for another.

But we all still deserve to be treated.  And we all deserve the chance to be healthy or cured.  And good patient-centered CER can help.

As important as patient-centered CER is, however, it is equally important that CER is used properly.
We cannot allow the thought process that if a CER trial reveals that one method of treating a medical condition works better than another for a majority of people, then the generally less effective method should not be covered.

Fortunately, the CER provisions in the health reform law require the research to recognize patient differences, and include specific references to genetic differences in patients.

If these provisions are implemented well -- and if policy-makers resist the temptation to use them in one-size-fits-all policies to cut costs -- CER can improve patient care and advance personalized medicine.

I – and so many other patients - know that there are many special considerations that need to be taken into account.  And we need our doctors to have the ability to work with us to find the medical treatment that works best for us.

Today, I’m working with dozens of patient and provider groups – including four members of the Alliance of Specialty Medicine – in a coalition of over 40 groups to ensure that CER is used right.

Our coalition, the Partnership to Improve Patient Care – or PIPC – because everything in Washington has to have an acronym, was joined by more than 80 other patient groups in urging Congress to include patient-centered CER in the final health care bill.
Our broad coalition was actively engaged in the public policy discussion for more than a year. 

And we are especially pleased that the law President Obama signed included the Patient Centered Outcomes Research Institute.

And we believe that it will play an instrumental role in keeping CER focused on the patient.

The institute is a non-government entity which will facilitate CER efforts and disseminate results in a manner that can be understood by patients.

The institute’s Board of Governors will be run by various stakeholders in CER, including patients, who have tended to be left out of the CER decision-making all too often in the past.

I believe that the patient is the most important stakeholder in health care – and, as a patient – I’m excited that patients, for the first time, will be recognized as an important stakeholder in medical research.

Thanks to the new law, patients will have a seat at the table and a vote on the board.  And will be able to sit with the provider community, the research community, and the government as research and information dissemination decisions are made. 
To ensure a broad and fair representation on the Institute’s board, PIPC and our allies are already monitoring the board’s nomination process.

We believe the Institute must be set up as quickly as possible, both to ensure its independence and so that it can get right down to its important work of facilitating patient-centered CER efforts as quickly as possible.

It is vital that representatives appointed to this board understand subpopulation research so that minority populations, which have often been largely underrepresented in past research trials, do not continue to be overlooked.

And even when the Board comes to order, our work at PIPC will not be over. 

In the years ahead, PIPC will make sure that the Institute’s practices reflect the openness and transparency articulated in the health care law and that openness is not forgotten or changed as the public’s focus moves on to something else.

In closing, I’d like to ask the Alliance of Specialty Medicine to join us in helping to strengthen patient care. 

I believe our organizations have a natural synergy. 

Our nation’s health care system can only be as strong as its health care providers and our medical data.

Believe me, nobody understands that better than patients.

Working together, we can to ensure that CER is used properly, and not misused in ways that prevent patients from gaining access to medically beneficial care.

Furthermore, we should stand together in a commitment to make sure CER doesn’t overlook racial and ethnic minorities and other patient subpopulations, an issue of the utmost importance to PIPC.

I believe a partnership between PIPC and the Alliance would allow our organizations to work together, combining our talents and influence in order to further the interests of patients – and expand their access to specialized care.

Together we can play a role in improving and even saving countless lives and make the miracles of medicine a reality for more patients.

I want to thank you again for having me here today and I look forward to working with you to bring about a healthier nation.