Reminder: Patient-Centered Outcomes Research Institute Seeks Public Comment on What Matters to Patients

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Designing healthcare research with what matters to patients is a relatively new concept in healthcare research. If the healthcare reformers who envisaged what is called “patient-centered outcomes research” truly want to hear from patients and the public, then tomorrow’s meeting  in New York of the Board of Governors of the Patient Centered Outcomes Research Institute (aka PCORI), soliciting public comment on research priorities will be a seachange in healthcare research.

It would be great if you went if you went and offered your thoughts on research priorities.  Let researchers know about the gaps in care and practice that you have experienced and make a case for funding research into those areas.

Again, here are the details:

This Monday and Tuesday, May 16-17, 2011, the Patient Centered Outcomes Research Institute Board of Governors Meeting will be held at the

Millennium Broadway Hotel

145 West 44th Street, New York, NY 10036-4012

Draft Agenda

Monday, May 16, 2011

1:00-1:10 pm Welcome and Approval of Jan. Board Meeting Meeting Minutes

1:10-1:45 pm Presentation and Discussion of Mission Statement and Logo

1:45-3:15 pm Program Development Committee Report

3:15-3:30 pm Break

3:30 to 4:00 pm Public Comment Period

4:00 to 5:30 pm Methodology Committee Report

5:30 pm Adjournment

Discussion Forum Monday evening

Tuesday, May 17, 2011

8:00 – 8:45 am Finance and Administration Committee Report

8:45 – 9:15 am Consideration of and Vote on Budget

9:15—9:45 am Public Comment Period

9:45 – 10:15 am Break

10:15-11:30 am Public Affairs and Communications Committee Report

11:30-11:45 am Wrap-Up and AdjournmentAll of the  sessions are open to the public. Individuals only need to RSVP to the evening session. If you want to issue a public comment on the day of the event, you can sign up to speak on-site the day of the event or can provide PCORI advance notice of their intent to speak by emailing info@pcori.org.

Hope you all had a great weekend! Give me a shout if you are there, planning to go, or if you cannot make it and have something that you want them to know. You can raise it in a tweet to me at lauranewmanny or via email at patientpov “dot” gmail “dot” com.

 

Clarification: Patient-Centered Outcomes Research Meeting Set for Two Days, One Evening

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My earlier post neglected to mention that this meeting will take place on Monday, May 16th and May 17th. Unfortunately, the Discussion Forum was on a separate announcement. It will still take place, but you may want to attend all or part of the rest of the meeting. Draft agenda is listed below.
If you are a patient and plan to attend, consider letting me know at patientpov “at” gmail “dot” com. I’d like to get your take on this meeting. I may be interested in guest posts.

Patient Centered Outcomes Research Institute, May 16-17, 2011, New York City

Board of Governors Meeting
Millennium Broadway Hotel New York
145 West 44th Street, New York, NY 10036-4012

Draft Agenda

Monday, May 16, 2011
1:00-1:10 pm Welcome and Approval of Jan. Board Meeting Meeting Minutes
1:10-1:45 pm Presentation and Discussion of Mission Statement and Logo
1:45-3:15 pm Program Development Committee Report
3:15-3:30 pm Break
3:30 to 4:00 pm Public Comment Period
4:00 to 5:30 pm Methodology Committee Report
5:30 pm Adjournment

Monday evening, May 16, 2011 – RSVP requested

Discussion Forum (see above link)

Tuesday, May 17, 2011
8:00 – 8:45 am Finance and Administration Committee Report
8:45 – 9:15 am Consideration of and Vote on Budget
9:15—9:45 am Public Comment Period
9:45 – 10:15 am Break
10:15-11:30 am Public Affairs and Communications Committee Report
11:30-11:45 am Wrap-Up and Adjournment

All of the above sessions are open to the public. Individuals only need to RSVP to the evening session. If you want to issue a public comment on the day of the event, you can sign up to speak on-site the day of the event or can provide PCORI advance notice of their intent to speak by emailing info@pcori.org.

Upcoming Event: Putting the Patient in the Center of Health Care Research

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Has health care research seemed removed from you, as if it happens from the top down? That’s understandable.

Health policy people and reformers often lament that they exist in a separate world, wondering what the heck matters to patients. So I was intrigued yesterday when a friend called to tell me that there was a notice in the Sunday New York Times inviting the public to a forum on Patient-Centered Outcomes Research in New York City, Monday, May 16, 2011. (I could not find it in the NYTimes online.) Please note important additions to this post, including information on two days of meetings.

If you are interested in health care, wonder how researchers set priorities for health care research, and especially if you have a point of view on what treatments and tests should be studied further, I urge you to RSVP and attend. Registrations must be received by Thursday May 12.

And if you wonder what health care reform might be able to do for you, focusing on what matters to patients is a big part of the 2010 health care reform law, also known as the Patient Protection and Affordability Act (PPACA), sometimes pronounced P-PACKA. I am taking pains to explain this because I worry that a language barrier exists between people who have been involved in legislation and policy and patients.

The health reform law created a non-profit Patient-Centered Outcomes Research Institute, a nonprofit organization that is independent from the government, with several different people representing different interests (a.k.a. stakeholders) who sit on a Board of Governors. This effort began in 2009 with stimulus money of $1.1 billion to support comparing available treatments, using a variety of research strategies.

The goal is to use what is called “comparative effectiveness research” or CER. It sure can sound like jargon, but when you break it down, CER rigorously compares available treatments, using a range of research methods, such as clinical trials, observational studies, systematic reviews, and structured assessment of evidence available from several primary studies. By 2014, public-private funding totaling $650 million will support the program.

I have no idea how the small group discussions about research priorities will go, but if you are interested in seeing the patient voice taken seriously in health research, you might try to make it. This forum is just one of several around the country. I will keep you posted.

The Patient Centered Outcomes Research Institute Forum

is set for:
Monday, May 16, 2011, 7:00-9:00PM. EST
Millennium Broadway Hotel New York, Gallery 8 on the 8th Floor (right near Times Square)
145 West 44th Street, New York 10036-4012

You must RSVP to info@pcori.org no later than Thursday, May 12. When registering, you should write in the subject line “NY Stakeholder Discussion Group” and in the body of your email “RSVP.” Further details on the forum are posted.