Accelerating Patient-Centered Outcomes Research and Methodological Research

November 8, 2012 by Joe Selby, MD, MPH

Joe.Selby_137X160“Infrastructure” is one of the buzzwords of the moment, and “research infrastructure” is mentioned just about as often.  But here at PCORI, we know that to fulfill our mission, it will be essential that we improve the nation’s underlying capacity to conduct patient-centered outcomes research (PCOR) – rapidly, efficiently and repeatedly.

Doing so will take building a data infrastructure as well as improving analytic methods and training of researchers, patients and other stakeholders to do this research. The need for high-quality, patient-centered, comparative effectiveness evidence is not going to go away.  So these steps will be needed to make certain that patients and those who care for them have the information they need, now and into the future, to support decision making for the health and healthcare choices they face.

One of PCORI’s five National Priorities for Research, “Accelerating Patient-Centered Outcomes Research and Methodological Research,” addresses this need. As our National Priorities note, “the nation’s capacity to conduct patient-centered comparative effectiveness research quickly and efficiently remains extremely limited.”

We began to explore infrastructure issues in depth in July at our first National Workshop to Advance the Use of Electronic Data in Patient-Centered Outcomes Research. Based on feedback from the workshop, which I wrote about in a July 20 blog post, as well as ongoing dialogue with the National Institutes of Health and the Agency for Healthcare Research and Quality, we are beginning to issue funding announcements to assess the landscape and solicit more information from the community.

Developing a Comprehensive Inventory of Research Networks

On November 2, we issued a request for proposal (RFP) for a “Comprehensive Inventory of Research Networks.” Responses are due by November 26, and we’re accepting questions about the RFP through November 16 by email to rfp@pcori.org. The goal of the request is to help us understand the diversity of approaches and the barriers, capacity, and potential for adapting current infrastructures to provide scalable platforms conducive to conducting PCOR.

We’re very interested in the concept of a clinical research infrastructure that can serve as an efficient, reusable platform for conducting comparative effectiveness research, including both randomized and observational studies, that engages patients at the center of the process – in building, governing and using the infrastructure. We believe that such infrastructure is integral to sustaining successful PCOR.

Additional Requests for Information and Funding Opportunities on the Horizon

Building on the RFP, we will issue a separate request for information (RFI) this month to gather additional information from individuals or organizations familiar with research data networks and patient research networks and the opportunities they may provide for conducting PCOR. This information will assist PCORI as it considers development of a funding announcement in this area.

In addition to learning more about the known infrastructure landscape, we hope to discover previously unappreciated opportunities that could facilitate meaningful high quality PCOR. As one example, we’d be interested in learning about the capability of current or future networks to rapidly identify and involve large numbers of eligible patients in randomized clinical trials.

In addition, we will soon issue a PCORI Funding Announcement (PFA) on “Improving Methods for Conducting Patient-Centered Outcomes Research.” This PFA will solicit studies to address gaps in methodological research relevant to conducting PCOR. We anticipate committing about $12 million to support approximately 14 contracts in the first cycle of this PFA.

We hope that the results of these studies will enable the research community to conduct PCOR with greater validity and efficiency.  They may also inform future iterations of PCORI’s Methodology Report and its standards. The improvement of existing methods will benefit all stakeholders, including researchers planning investigations, policy makers weighing the value of healthcare interventions, and patients, clinicians, and caregivers facing healthcare decisions.

We’re very excited that our work in “Accelerating Patient-Centered Outcomes Research and Methodological Research” is expanding rapidly, and we invite you to help us as we continue to make progress. To stay informed about this and all of our research funding opportunities, please subscribe to our e-mail list or check the Funding Opportunities section of our website frequently.

Dr. Selby is PCORI’s Executive Director



3 Responses to“Accelerating Patient-Centered Outcomes Research and Methodological Research”

  1. Matthew Steele

    Dear PCORI staff:

    As I have mentioned, I loved meeting all of you and really enjoyed the Transforming Patient-Centered Research: Building Patnerships & Promising Models workshop in Washington DC on October 26 – October 28 2012.

    I have never led any research studies in areas relevant to what you are looking for in the RFP or RFI, so take the following ideas as you will. My first idea is to build on this idea I spoke at 6 times called Learning From Our Differences. Each day of the week the kids would meet peers of theirs or people from the community who were patients of certain disabilities. These patients would create awareness, tell their audience how to medically deal with it, interact with them, and take questions. You could do before and after questionairres to see if there was an impovement in the audiences knowledge. It would be involving patients while educating others. My second idea is mixing the doctors side, your side, and the patients side and meeting in the middle by having a panel of doctors and reseachers agree on some number of topics they would not mind investigating (maybe 15). Then these ideas are proposed to the people through email, blogs, and a Facebook page. Tell them their response is due within a certain time (maybe 1 month). The top certain amount (maybe 5) are the topics that will be investigated by people. I feel like this is a good way to keep everyone happy.

    As I said, I do not have impact numbers or a research backgound, I just wanted to throw these ideas out there. Please let me know what you think. Thank you for your time.

    Sincerely,

    Matthew Steele
    Cell: (717) – 425 – 8188
    Home: (717) -791 -9162

    Reply
  2. Gregory Milimo Okiya

    Accelerating patient- centered outcomes research and methodological research, will make patients to have a strong belief in Pcori’s researchers, clinicians, pratictioners, caregivers, organizations, individuals and any communities that might be will to contribute crucial information’s so that, we can achieve a high quality findings in our research study, for the benefit of our patients that are suffering from these chronic and multiple chronic diseases worldwide. Improving on Networking will ease all Healthcare system to learn a lot from different destinations thus gaining more experience and unity in work. These will also reinforce competition in achieving high quality findings in research study, especially in these chronic and multiple chronic diseases. Accelerating patient-centered outcomes research and methodological research is a wonderful sign of democracy in peoples mind worldwide, that Pcori’s staff is very much committed in justice, humanitarian and exercising democracy in each and every department it operates. Building on the REP and requesting different information(RFI) from different individual,organizations,familiar with research network, these is a wise a approach of fishing the best quality findings needed for these chronic diseases from class root (it’s a wise, white brain network approach ). When you want to tackle and get a solution for the really problem. This will bring a clear picture in peoples mind that Pcori is there to care for those patients with chronic and multiple chronic diseases and they are there to belief in the cause, action and its effectiveness and they are doing the really work in order to get the really high quality findings that are medicine for these chronic and multiple chronic diseases that are claiming lives of our people worldwide.
    There is need for donors to fund such organizations that are coming up with new invention and discoveries in medicines that are close to the common man, to assist patients who suffer from various diseases. Such Improvement will help institutions to go a long way to help these people in terms of medicines either herbal or artificial.
    They will also assist patients to meet their nutritional needs, care, shelters and assist those orphans that are left after their parents have past a way from such diseases.Inshort accelerating patient-centered outcomes research and methodological research is improving patient’s welfares and those who care for them.

    NB- Point of awareness,do you know that most patients with prostate cancer when the disease is at it’s long term in the patient’s body, it at long last effects males libido.At same time the patient finds difficult in urinating’.The patient now develops penile cancer and also that is where lyphomas gland cancer,periteneal cancer,stomach cancer,abdominal cancer that is where many different cancers comes into existence in patients body.Thank you.

    Reply
  3. Dr Gregory Milimo Okiya

    Accelerating patient- centered outcomes research and methodological research, will make patients to have a strong belief in Pcori’s researchers, clinicians, practitioners, caregivers, organizations, individuals and any communities that might be will to contribute crucial information so that, we can achieve a high quality findings in our research study, for the benefit of our patients that are suffering from these chronic and multiple chronic diseases worldwide. Improving on Networking will ease all Health care system to learn a lot from different destinations thus gaining more experience and unity in work. These will also reinforce competition in achieving high quality findings in research study, especially in these chronic and multiple chronic diseases. Accelerating patient-centered outcomes research and methodological research is a wonderful sign of democracy in peoples mind, that Pcori’s staff is very much committed in justice, humanitarian and exercising democracy in each and every department it operates. Building on the REP and requesting different information(RFI) from different individual,organizations,familiar with research network, these is a wise a approach of fishing the best quality findings needed for these chronic diseases from class root (it’s a wise, white brain network approach ). Pcori is there to make sure that each and every proposals submitted justice is done through transparent stages without discriminating any proposal and when PCORI finds there is need for any proposal to rectify where there is mistakes and resend your proposals again you have to do so through (REP). By so doing Pcori will be giving everyone chance, determination and courageous in their work. This will bring a clear picture in peoples mind that Pcori is still minding their proposals and their needs as researchers, clinicians,practitioners, caregivers stake holders ,patients,organizations,communities or any individuals that might have best information in contributing quality findings that are medicine for these chronic and multiple chronic diseases that are claiming lives of our people worldwide.
    There is need for donors to fund such organizations that are coming up with new invention and discoveries in medicines that are close to the common man, to assist patients who suffer from various diseases. Such Improvement will help institutions to go a long way to help these people in terms of medicines either herbal or artificial.
    They will also assist patients to meet their nutritional needs, care, shelters and assist those orphans that are left after their parents have past a way from such diseases.In short accelerating patient-centered outcomes research and methodological research is improving patient’s welfares,researchers,clinicians,practitioners,caregivers and also improving all Health care system at large,
    Thanks indeed.
    Phone cell
    071 122 4419
    073 541 1101
    Dr Gregory Milimo Okiya.

    -

    Reply

Leave a Reply