Board of Governors Meeting, New Orleans

Benjamin Springgate MD, MPH

Tulane School of Medicine

RAND Corporation, REACH NOLA

PCORI Board of Governors

November 14, 2011

What is patient-centered research?

What is patient-centered research? “In many underserved communities, “research” is a loaded word

that sets expectations of being examined or exploited. This is more

likely when data are published but not otherwise shared, such as in

a community forum. Research, whether it intends to or not, may

disadvantage groups by highlighting problems rather than

assets….In community-partnered participatory research (CPPR),

partners are valued equally and collaborate jointly in research

development, implementation, and dissemination. Those involved

learn to appreciate that knowledge comes in many forms,

including data, experience, history, and perception.

- Kenneth Wells and Loretta Jones. “Research” in Community-

Partnered Participatory Research. JAMA, 2009;302(3):320-321.

Community-partnered participatory

research in New Orleans

(2006) Community-partnered participatory research identifies

post-disaster healthcare challenges and solutions (Springgate et al 2009)

(2007 - 2010) Community-partnered, research-informed agenda

drives improvement in healthcare services delivery (Springgate et al

2011)

Quality improvement program of 70 organizations and 400

health care providers of mental health services in primary care,

specialty care, and community settings

More than 110,000 mental health services delivered


Shares a number of similarities with CPPR in terms of opportunities and challenges

PCORI faces a number of concurrent opportunities and challenges

Limitations of information use

Building trust

Sustained and equitable engagement

Results that are actionable, understandable, responsive to needs

Accountability in desire for input and feedback

Who do we mean?


PCORI – multiple statutory limitations on use of its

evidence and findings, as well as on measures that can be

considered;

Whether at the patient level, or at a provider level, health

and health care decision-making, or engagement and

research, optimally is not conducted in environments that

operate with a priori limitations on how materially

relevant information and products of research can be used


PCORI: Seeks to “produce information that patients and

their health care providers can trust”

Partnered approaches to research may foster trust and

advance rigor

UCLA/RAND NIMH Partnered Research Center for

Quality Care offers an excellent prototype for high

quality, partnered research

Emphasis on practical information and transparent

products of research may also enhance trust


PCORI: Patients “tell us what health care outcomes they value”

Opportunity to hear about patients’ values may require committed engagement with particular attention to: Times, locations, language, and resources that permit

sustained participation of diverse groups of patients and stakeholders;

Equitable division of research program and infrastructure funding;

Use of systems that reliably exchange information with large numbers of patients, such as modified Delphi methods or social media applications (Dalal et al 2011; Goodman et al 2011)


PCORI: “Results of research are provided to patients

and clinicians in ways that are responsive to their needs

and interests and easy to understand”

Responsive and understandable products of research –

should this be an requirement for research proposals to

be funded?

Would it be useful for researcher teams have to identify

in advance which end-users (e.g. patient advocacy

groups, physician groups, or hospital systems) agree to

use the products of the research in daily practice?

What is patient-centered research? PCORI: “Obtain public input and feedback prior to

adoption of priorities, agendas, methodological standards, peer review processes or dissemination strategies”

Is such “input and feedback” sufficiently patient-centered to be meaningful? Will it occur at critical decision-making junctures at the highest levels of PCORI itself?

Should patients have real (veto) authority on patient-led or co-led institutional review boards and research teams for every PCORI-funded project? On every PCORI review committee?

What is patient-centered research? PCORI :

“Given my personal characteristics, conditions and preferences, what should I expect will happen to me?”

“What are my options and what are the benefits and harms of those options?”

“What can I do to improve the outcomes that are most important to me?”

“How can the health care system improve my chances of achieving the outcomes I prefer?”

WHO does PCORI mean? How convinced are THEY that you mean it?

References

Dalal S, Khodyakov D, Srinivasan R, Straus S, Adams J. ExpertLens: A system for eliciting opinions from a large pool of non-collocated experts with diverse knowledge. Technological Forecasting & Social Change. 2011; 78:1426–1444.

Goodman J, Wennerstrom A, Springgate B. Participatory and social media to engage hard-to reach populations: from the Obama campaign to public health practice. Ethnicity and Disease. 2011; 21(3 Supplement 1): 94-99.

Springgate B, Allen C, Jones C, Lovera S, Meyers D, Campbell L, Palinkas L, Wells K. A rapid community participatory assessment of healthcare access in post-Katrina New Orleans. American Journal of Preventive Medicine. 2009; 37 (6S1), S237-S243

Springgate B, Wennerstrom A, Meyers D, Allen C, Vannoy S, Bentham W, Wells K. Building community resilience through mental health infrastructure and training in post-Katrina New Orleans. Ethnicity and Disease. 2011; 21(3 Supplement 1): 20-29.

Wells, K and Jones, L. “Research” in Community-Partnered Participatory Research. JAMA, 2009;302(3):320-321.

Thank you.

Please enjoy

New Orleans. Contact: [email protected]

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Edward Trapido, Sc.D., F.A.C.E. Professor of Epidemiology and Associate Dean of Research

LSU School of Public Health Wendell Gauthier Chair for Cancer Epidemiology

Stanley S. Scott Cancer Center LSU Health Sciences Center, New Orleans, Louisiana

President Elect, American College of Epidemiology

11/13/11 New Orleans, LA

Identified on the basis of

Changes in population

Changes in disease rates

Changes in medical coverage (unclear at the present)

http://cancer.iaea.org/index.asp

The U.S. population will be older than it is now. In 2011, the first members of the Baby Boom reached age 65, and the Baby Boom will have decreased to 25 percent of the total population (in the middle series). The last of the Baby-Boom population will reach age 65 in the year 2029. Life expectancy is increasing.

The U.S. population is becoming more

diverse by race and Hispanic origin.


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Of all the causes of death in the US, just 5 account for over 70% or 7 out of every 10 deaths.

Of these, just two, heart disease and cancer, account for over half of all deaths in the country.


Background:

Guidelines for diagnosing and treating most health problems exist

Applying guidelines is often infeasible for large, uninsured, low SES, limited education, or minority populations , due to limited dollars, capacity, available providers, access, etc. e.g., too few gastroenterologists to perform colonoscopy on

everyone over 50 in the populations seen in medical care systems that treat these populations, like the LSU Patient Electronic Health Information and Care Network (which will reach 500,000 unique patients per year who visit the system’s public hospitals and affiliated clinics)


Patient concerns:

Access to services

Connectivity between services

Time delays

Effectiveness of alternative approaches, drawbacks of using an alternative approach, or adherence to a regimen?

Will there be side effects afterwards that are worse than the recommended approach?


PCORI’s potential role:

Could support either existing or new surveillance programs that adequately identify gaps in services being available and accessed, or test whether alternative approaches are effective.

Support development and testing of programs that assist uninsured, low SES, limited education, or minority populations in increasing their knowledge and comfort with asking questions and/or raising concerns about medical treatments being offered.


PCORI’s potential role:

Could support funding of post-marketing drug or procedure outcomes among more diverse population groups (i.e., than were included in pre-market testing)

Could support research to identify programs to increase capacity for self- and collective care.


Background:

As the population ages, cancer, stroke, diabetes and heart disease will be increasingly common. The proportion of the very old will increase.

The experiences with medications (doses, interactions), risks of surgical procedures, (accounting for comorbidity and concurrent medications) is documented only at the local institutional level.


Background:

Furthermore, the health care system (and most current methods of reimbursement) are not designed for managing chronic diseases optimally; they may fail to meet the needs both of patients and physicians in coordinating caregivers, information, interventions, and providing incentives to physicians.

http://www.qualityprofiles.org/leadership_series/diabetes/diabetes_addressing_quality_gaps.asp


Patient Concerns: Desired patient centered outcomes (PCO) change over

time. Return to “normalcy” as a desired outcome may be replaced by return to merely being functional. With age, a return to being independent may be displaced by merely a desire to be without pain.

When there is accompanying cognitive impairment or dementia, PCO become hard to elicit.

For those considering various procedures, PCOs include how much pain they will feel during/after the procedure, what will be result of the medication or procedure, what will be the outcomes (good and bad), and what kind of support they will need afterwards.


Patient Concerns: Patients may not know what to ask providers, or may feel

uncomfortable about “challenging” providers. [Patients must overcome their personal barriers to managing their disease successfully, which they may perceive as severe and numerous.] http://www.qualityprofiles.org/leadership_series/diabetes/diabetes_addressing_quality_gaps.asp

Older patients’ health problems do not occur only during “office hours” (i.e., Monday-Friday, 9am-5pm). Older patients are usually told to go to an emergency room on Friday, Saturday, or Sunday, which is less than ideal.


PCORI’s potential role: Document

the sequential expectations of older individuals, and develop/ enhance shared databases from providers who serve large older populations on patient health, treatments, reported symptoms, outcomes.

the direct and support service needs of older patients.

Support

development and testing of programs that assist older patients in increasing their knowledge and comfort with asking questions and/or raising concerns about medical treatments being offered.

exploration of a government directed national Senior Health Information Service, which would run 24/7.

Identification of best practices for older patients following discharge from hospital- e.g., stroke patients.

better communication strategies with, and support for caregivers.


Background:

Palliative care strategies are rarely included in overall healthcare discussions. Training for palliative care is rarely included in healthcare education curricula. Institutions that provide palliative and end-of-life care often rely on volunteer or charitable status.

There is a general underuse of painkilling drugs for a variety of reasons, including concerns of illicit use. The result often is more pain for the patient, and more for their families.


Background:

The inclusion of palliative care into broader health policy, and the development/improvement of standards of end-of-life care—raising the “quality of death”—will also yield significant gains for humanity’s quality of life (http://www.eiu.com/site_info.asp?info_name=qualityofdeath_lienfoundation&page=noads&rf=0#)

Many of the people who could benefit from palliative and end-of-life care do not receive it . It is often left to patients, their families and a loosely knit community of volunteer organizations to sort through the myriad of physical, psychological, spiritual and ethical choices. http://www.cihr-irsc.gc.ca/e/36889.html


Patient concerns: What is the expected course of the remainder of life? How much pain

will there be? If medication is taken to stop pain, will there be a consequent disconnection from reality? Will it be hard on my family or friends?

PCORI’s potential role: Develop common data definitions for palliative care. Determine clinical

quality profiles.

Develop a palliative care surveillance system, similar to that set up in several provinces in Canada. Establish epidemiologic profiles of survival.

Support development of research to determine the best practices in palliative care medicine, particularly as related to end of life.

Determine how personal, social and environmental factors affect care.


One method of prioritizing PCORI’s focus is to look at

population distribution and the medical issues related to the population,

some measure of disease occurrence, and

recognizing that changes in medical services will likely be more guideline- (and cost-) driven in the future.

Using this approach, the older populations’ expected burden i.e., chronic debilitating and ultimately fatal diseases, requires determination of existing practices, comparison of effectiveness, and increasing public awareness about options and their associated outcomes.

Analogously, there are populations for whom recommended guidelines are infeasible. Yet, these populations receive treatment and care (and dollars are being spent).

Evaluation of the effectiveness of care and treatment needs to be performed

Existing databases used for indentifying alternative approaches to education, prevention, diagnosis, treatment, and palliation.


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Edward Trapido, Sc.D., F.A.C.E. [email protected]

www.publichealth.lsuhsc.edu

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Board of Governors Meeting, New Orleans

Health & Medicine

Transcript of Board of Governors Meeting, New Orleans