Join Patient-Centered Outcomes Research Institute (PCORI) Dialogue on National Research Priorities Today

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Are you interested in participating in efforts to shape patient-centered outcomes research priorities. Then, don’t miss today’s meeting, webcast starting 9:30 am, or via telephone to 800 number line posted below. Got comments for the PCORI people: see submission guidelines. Disclosure: This blog is independent and not part of this effort.

The Patient-Centered Outcomes Research Institute (PCORI) will hold a National Patient and Stakeholder Dialogue on its first draft National Priorities for Research and Research Agenda on Monday, February 27, 2012, from 9:30 a.m.-5:00 p.m. EST, at the National Press Club in Washington, D.C.

Agenda

View Webcast

The event will dedicate three and a half hours to receiving public comment, and include presentations by PCORI and a roundtable discussion involving patient advocates, clinicians and others from the health care community.

Individuals can register to attend and provide public comment here. A webcast and teleconference will be provided. A portion of the comment period will be reserved to receive input from individuals participating by phone.

Advanced Registration is now closed, as of February 23, because the event space has reached capacity. The webcast will remain open to the public. You do not need to register in advance to view the webcast.

The event webcast will feature full audio through your computer so there is no need to call in to the teleconference if you are watching online. We strongly encourage individuals with internet access to watch the webcast to keep the phone lines open to those who do not. You can access the Monday’s webcast here.

To listen to the event by telephone call: 800-704-5185.

The National Patient and Stakeholder Dialogue supports PCORI’s public comment period on the national priorities and research agenda and provides individuals an opportunity to speak directly to PCORI in an open, public format.

Guidelines for Public Comments

What’s the Patient Got to Do with It?

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Here we are discussing the prostate cancer screening guidelines, but what bothers me is that the patient is brought in as a footnote at the end of the analysis. I find it really dispiriting that there is so much lip service to “patient-centered” medical homes, outcomes research, and more, yet the patients are on the periphery of the discussion. Heck, we are an industry now, except it is all from the outside looking in!

Maybe, before academics, policy wonks, and patient engagement companies hole up and review the evidence on important issues affecting you and me, they ought to open the general topic for public commenting and questioning that is out there for everyone to see.

I know what you are thinking –and of course, it has occurred to me too: I am talking chaos. Well, perhaps…but…maybe we must do better. What if we had more feedback loops where patients and the public enter into real-time discussions at the front end, when priorities are being set, where care is being given?

In some parts of the world, medical technology assessment discussions bring patients in from the start before decisions are made on whether or not to cover specific items. What about webcasts available on demand where the logic of evidence reviews is easy to find? What about more Q&As bringing patients in? Maybe the questions asked would shift if patients participated as real partners. Maybe the answers would be more understandable.

We need more of this in the US. Without it, we perpetuate distrust, anger, and a mockery of the science.

An Update: The Patient-Centered Outcomes Research Institute Meeting in New York

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After urging readers to attend the Patient-Centered Outcomes Research Institute (PCORI) daytime meetings in New York on Monday and Tuesday of this week, I have to say that after attending day 1, I was disappointed. That’s because it turned out to be primarily a business meeting with a mandatory public invite because PCORI is federally funded.

Members of the audience sat passively in the audience because they were not part of the PCORI Board of Governors. Therefore, plenty of the discussion went on as if we were not there. You may as well have been behind glass. No agenda or handouts were available on site for the audience, but I was told that materials were posted on the PCORI website the day before.

The day’s events were webcast, but the webcast is no longer available. A public comment period was part of  both days. Most commenters in the Monday session pressed for inclusion in the work that follows.

I don’t fault PCORI for the way that the day unfolded. The group is just beginning. And I regret that I was unable to make the evening discussion forum, which was set up for public discussion.

I was impressed that some of the Board of Governors went out of their way to engage participants during the breaks, promising to move towards inclusion of the public. I have hopes that if PCORI involved the public and patients in a meaningful way, and from the outset, perhaps health care research would focus more on what matters to patients, not what researchers assume should matter to patients.

Involving patients early on would also have a more far-reaching societal benefit: more Americans would see firsthand the potential of healthcare research and healthcare reform to work for them.

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.