Need for greater patient and clinician involvement in comparative clinical effectiveness research

April 17, 2012

More involvement by patients, clinicians and others in the health care community in developing comparative clinical effectiveness research studies will make such studies far more useful in clinical decision-making, according to the Patient-Centered Outcomes Research Institute, in an article published in the April 18 issue of JAMA, a theme issue on comparative effectiveness research.

Anne C. Beal, M.D., M.P.H., of the Patient-Centered Outcomes Research Institute (PCORI), Washington, D.C., presented the article at a JAMA media briefing at the National Press Club.

The and Act of 2010 created PCORI to fund and promote comparative clinical (CER) that will "assist patients, , purchasers, and in making informed by advancing the quality and relevance of evidence concerning the manner in which diseases, disorders, and other can effectively and appropriately be prevented, diagnosed, treated, monitored, and managed through research and evidence synthesis," according to information in the article.

The institute developed a definition of patient-centered outcomes research that emphasizes the voice of the patient in assessing options. "The PCORI mission statement commits to producing and promoting high-integrity research that is 'guided by patients, caregivers, and the broader healthcare community.' The institute's first funding announcement solicited projects focused on methods for engaging patients and other stakeholders in all aspects of the research process," Dr. Beal and colleagues write. There have been more than 800 responses to this announcement, with merit review currently being conducted. The process has been modified in 2 ways: 1) stakeholders, including patients, caregivers, and clinicians, were invited via the PCORI website to sign up if they were interested in participating in the merit reviews; 2) proposed scoring criteria included an additional criterion - extent of patient engagement.

The founding legislation required PCORI to develop national priorities for research and a research agenda, and to post both for a 45- to 60-day public comment period before major funding for research could begin. The development process extended from July to December 2011, and included examination of other recent prioritization efforts and input received through discussions with stakeholder groups, including patients and their caregivers, clinicians, hospitals and health care systems, payers, the life sciences industry, and the research community. The process produced 5 national priorities, which are: 1) assessment of options for prevention, diagnosis, and treatment; 2) improving health care systems; 3) dissemination and communications research; 4) addressing disparities; and 5) accelerating patient-centered outcomes research and methodology. "The national priorities encompass many research areas cited by earlier priority-setting groups, but add a patient-centered perspective," the authors note.

According to the authors, transparency is a key principle for PCORI, and the public comment period included collection of input through an online survey, discussion with individuals through focus groups conducted throughout the United States, and a national dialogue event and webcast midway through the comment period. Analysis of this input and resulting revisions to the priorities and agenda are under way and the initial funding announcements are expected in May 2012. "Applicants will be instructed to explain how their proposed research aligns with the statutory criteria and to describe how patients and other stakeholders will be engaged in and benefit from the research. The initial portfolio of funded research is expected to cover a range of conditions and interventions, to be exemplary of stakeholder-engaged research, and to be highly aligned with the criteria."

"The proposition that greater involvement of patients, clinicians, and others in the research process could help reorient the clinical research enterprise, reduce clinical uncertainty, and speed adoption of meaningful findings holds great promise, but remains to be tested. PCORI will test this hypothesis. The underlying imperative is to improve patients' care experience, decision making, and health outcomes. Patients as well as the physicians and other health care professionals who care for and about them are invited and encouraged to join in this effort," the authors conclude.

Explore further: Carpal tunnel syndrome patients prefer to share decision-making with their physicians

More information: JAMA. 2012;307[15]:1583-1584.

Related Stories

Carpal tunnel syndrome patients prefer to share decision-making with their physicians

August 8, 2011
Patients receiving treatment for carpal tunnel syndrome (CTS) prefer to play a more collaborative role when it comes to making decisions about their medical or surgical care, according to the findings of an August 3rd issue ...

Patient-centered care starts with education

October 31, 2011
The main challenge to providing patient-centred health care is education, as many patients do know how to access the health care system, states an editorial in CMAJ (Canadian Medical Association Journal).

Training future doctors to enlist patients as partners in care

April 14, 2011
With mounting evidence that patient-centered care improves medical outcomes, investigators from the Regenstrief Institute and Indiana University School of Medicine are providing a call to action for the training of future ...

Recommended for you

One in 4 women and 1 in 6 men aged 65+ will be physically disabled in Europe by 2047

October 23, 2017
By 2047 one in four women and one in six men aged 65 and above is expected to be living with a physical disability that will severely restrict everyday activities, reveals an analysis published in the online journal BMJ Open.

Protein regulates vitamin A metabolic pathways, prevents inflammation

October 23, 2017
A team of researchers from Case Western Reserve University School of Medicine have discovered how uncontrolled vitamin A metabolism in the gut can cause harmful inflammation. The discovery links diet to inflammatory diseases, ...

New insights into controversial diagnosis of adolescent chronic fatigue

October 23, 2017
Crucial new research could provide some clarity around the controversy surrounding the diagnosis and treatment of chronic fatigue syndrome (CFS) in adolescents. The research by the Murdoch Children's Research Institute published ...

Do boys really have a testosterone spurt at age four?

October 23, 2017
The idea that four-year-old boys have a spurt of testosterone is often used to explain challenging behaviour at this age.

Our laws don't do enough to protect our health data

October 23, 2017
Have you ever wondered why your computer often shows you ads that seem tailor-made for your interests? The answer is big data. By combing through extremely large datasets, analysts can reveal patterns in your behavior.

New prevention exercise programme to reduce rugby injuries

October 23, 2017
A new dynamic 20-minute exercise programme, performed by rugby players before training and pre-match, could dramatically reduce injuries in the sport according to a benchmark study published today (Sunday 22 October).

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.