Goal 2: Reduce Human Disease

Improving patient-centered outcome assessments in HLBS studies

What types of newer patient-centered quality of life assessment tools can be employed in heart, lung, blood and sleep studies so that they can be validated and refined to improve our measurement of quality of life outcomes in populations of interest to NHLBI?

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

Improving our ability to precisely measure heart, lung, blood, and sleep patients' quality of life can enable evaluation of a treatment's impact on patient-centered outcomes such as overall quality of life and its components -- pain, symptoms, and a patients' social, psychological, and physical functioning.

Feasibility and challenges of addressing this CQ or CC :

New tools have been developed, notably through the PROMIS common fund project, that allow potentially more precise, reliable, valid and sensitive measurement of Q of L outcomes, with less patient burden. These tools are available but require validation in HLBS populations to allow widespread adoption and routine use in NHLBI-supported clinical trials and population studies.

Advances in biomedical science mean we are living longer with chronic diseases, and the goal of treatment increasingly focuses on disease management, maximizing function, and improving quality of life, not just lengthening life. In addition, patient-centered approaches to health care encourage a view of patients as “whole persons” with emphasis on function and capturing the "patient's voice," not just mortality/morbidity outcomes. Functional and quality of life outcomes, e.g., assessment of pain, symptoms, emotional distress, physical & social functioning, are critically important outcomes to many HLBS patients, but their measurement requires self-reports of patient experiences and thus pose challenges to precise, valid and reliable assessment.

 

Assessment tools using computerized adaptive testing (CAT), such as those developed in the Patient-Reported Outcomes Measurement Information System (PROMIS) project, have been shown to be precise, valid, sensitive to change and easier to administer than traditional Q of L measures in a limited number of studies, but they require validation in HLBS patient populations before they can be used more widely in NHLBI-funded studies.

Name of idea submitter and other team members who worked on this idea : NHLBI Staff

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Goal 4: Develop Workforce and Resources

Shall we increase the transparency of the grant review process to prevent potential biases?

Financial and intellectual conflict(s) of interest are common in academic medical sciences. Those conflicts could potentially bias decisions of study section members and change grant application outcomes. During the grant review process, financial and/or intellectual conflict(s) of interest disclosures of the study section members are not readily available to the grant applicants or the public. Should the NHBI increase ...more »

Submitted by (@escalante.patricio)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

Increased transparency in the grant review process will provide a more plain level field for all applications, including new investigators with novel ideas.

Feasibility and challenges of addressing this CQ or CC :

Public disclosure of financial (more than intellectual) conflict(s) of interest are becoming the standard in medical societies and scientific publications.

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18 net votes
24 up votes
6 down votes
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Goal 4: Develop Workforce and Resources

Training and mentor support in global health

Why can’t all training grants (T, K, etc) be opened out to all people working in US institutions, regardless of citizenship or green-card?

Why can’t we establish mechanisms for US junior investigators and mentors interested in global NHLBI areas?

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

Current policy does not allow non-citizens and green-card holders to apply for most K and T grants. However, given the changing nature of US workforce, this policy needs to change. Current mechanisms do not easily enable US investigators to get support for global work……training and/or research.

Feasibility and challenges of addressing this CQ or CC :

Why not?

Name of idea submitter and other team members who worked on this idea : K.M. Venkat Narayan

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4 up votes
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Goal 2: Reduce Human Disease

Use Buteyko breath retraining to help patients manage and monitor their lung condition.

Buteyko Breath Retraining has been verified by the AHQR, Thorax Journal and other organizations as a legitimate technique to improve the symptoms of asthma and related respiratory illness. This simple technique could be instituted for a low cost to improve the quality of life of patients, reduce medications necessary for good control and save taxpayers and insurance companies a great deal of money.

Submitted by (@breathinglady)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

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1 up votes
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Goal 4: Develop Workforce and Resources

Making R01 funding work for the Medical Sciences

We need to spread R01 funding around more to ensure that the best science has funding adequate to move forward. To do this I believe changing how we think about R01 funding and expenditures can be used to put the NIH funds to better use. Too often successful researchers have the majority of their salaries on R01s and the institutions have little skin in the game. PI salaries can be a large part of the escalating budget ...more »

Submitted by (@wjones7)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

The impact of spreading the funding would be to improve funding rates, improve funding of new investigators, and supporting more diverse science. Negative impacts would include reduced funding some large labs. In my experience, in some cases, this would be a good thing. There could be special programs and exceptions for large labs that make significant important contributions and serve as resources to reduce negative impact. Review of grants should include information on manuscript retractions and large labs with many retractions should be carefully scrutinized for defunding.

Feasibility and challenges of addressing this CQ or CC :

Such changes would have to be made incrementally over time since this will require states and institutions to pick up some of the cost of science and therefore must be phased in to allow for time to adjust the workforce in specific places to align with budgetary constraints. Institutions might be encouraged to do more fundraising to actually support science to fill gaps.

Name of idea submitter and other team members who worked on this idea : Keith Jones with major input from Pieter de Tombe

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28 net votes
44 up votes
16 down votes
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Goal 1: Promote Human Health

Developing tools/algorithms for objective evaluation of sleep health

What are the best tools/algorithms for robust and objective evaluations of sleep health biomarkers?

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

Sleep deficiency is pervasive in today’s society and associated with an array of threats to health and public safety. The availability of a biomarker(s) for sleep health would turn-the-curve on developing practical and feasible ways to identify individuals at risk for sleep deficiency and prevent/manage associated risks to health and public safety on a large-scale.

Feasibility and challenges of addressing this CQ or CC :

Sleep and circadian regulation is coupled to an array of behavioral, physiological and molecular/genetic processes to leverage in the development of biomarkers for sleep health.

Untreated sleep disorders and sleep deficiency pose a significant burden on health and public safety. There is currently no biomarker, or point-of-care technology available to objectively measure an individual’s level of sleep deficiency or susceptibility, a significant barrier to prevention and management.

Name of idea submitter and other team members who worked on this idea : NHLBI Staff

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124 net votes
162 up votes
38 down votes
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Goal 2: Reduce Human Disease

Does epinephrine improve outcomes in OHCA

Epinephrine is the primary drug that is used in resuscitation but observational studies and a few small RCT suggest that it improves short term but not long term outcomes. Factors such as timing, dose, quality fo CPR and post-resuscitation care all confound the issue. Large RCTs conducted at multiple centers are desperately needed to address this question.

Submitted by (@dayam0)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

If short terms outcomes are improved but not long term outcomes, we are only adding costs and not improving population health

Feasibility and challenges of addressing this CQ or CC :

Will require a large prehospital clinical trials network and ideally also a current national registry of OHCA to address secular changes in other confounding variables

Name of idea submitter and other team members who worked on this idea : Mohamud Daya

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1 net vote
3 up votes
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Goal 3: Advance Translational Research

Developing adherence research to reduce unnecessary mobility/mortality/cost

From Cochrane Review NOV 20 2014 RB Haynes “It is uncertain how medicine adherence can consistently be improved so that the full health benefits of medicines can be realized. We need more advanced methods for researching ways to improve medicine adherence, including better interventions, better ways of measuring adherence, and studies that include sufficient patients to draw conclusions on clinically important effects.” ...more »

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

Effective medication exists to prevent or control most chronic diseases. The problem is that patients do not follow medical recommendations for a myriad of reasons. UNNECESSARY mortality, morbidity, poor quality of life and cost are the result of nonadherence. Intensive systematic research over a decade is the key to address the proposed challenge.

Feasibility and challenges of addressing this CQ or CC :

I have developed an hypothesis, currently being examined in a controlled study by NIHLBI, that merits further evaluation. One component(J Allergy Clin Immunol: In Practice 2013;1:23) is objective measuring of asthma patients with MDI electronic monitors that need technological improvement (battery life, measure inspiration). Patients evaluated in emergency department for most chronic diseases can be objectively evaluated for adherence by assays of medication that currently are available since they exist and necessary for medication to be approved by the FDA. Other components include: coordinated identification of patient barriers; application of clinical decision support strategies to specific barriers identified; patient-centered communication skills to deliver strategies in one delivery system. Many other interventions by other researchers may also be considered during the decade.

Name of idea submitter and other team members who worked on this idea : Andrew Weinstein and Asthma and Allergy Foundation of America

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5 net votes
7 up votes
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Goal 2: Reduce Human Disease

Interactions between anticoagulant therapy and antiretroviral drugs

Cardiovascular pathology has become a major problem in the management of the HIV-infected patient during the ART era. A large number of HIV patients will receive anticoagulants drugs for secondary prevention of cardiovascular disease. It is therefore critical to understand the interactions between antiretroviral therapy and anticoagulant therapy to safely treat HIV patients.

Submitted by (@pandrea)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

With over 50% of HIV-infected patients in the US anticipated to be > 50 years of age by 2015, the overall risk of CVD will be significantly higher and could become the main challenge for the management of chronic HIV infection. A large number of HIV-infected patients with CVD will therefore need treatment for primary and secondary prevention of atherothrombotic events. The secondary prevention of CVD almost invariably includes prescription of one or multiple anticoagulants drugs. It is therefore conceivable that anticoagulant therapies will be frequently associated with ART for the management of HIV patients, which already developed CVD. The interactions between these therapies are not well studied and are critical for the management of the HIV-infected patients.

Feasibility and challenges of addressing this CQ or CC :

Feasibility: 1) retrospective studies on a large number of HIV patients that had cardiovascular events and were treated with antiretroviral drugs; 2) prospective studies comparing different antiretroviral regimens associated with the most current anticoagulant therapy recommended for secondary prevention of CV disease; 3) use of animal models of AIDS for testing new anticoagulants and the interaction with the antiretroviral drugs.

Name of idea submitter and other team members who worked on this idea : Ivona Pandrea

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2 net votes
5 up votes
3 down votes
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Goal 2: Reduce Human Disease

Improve vascular healing and extend long term benefit of interventions

How can we develop new approaches to improve vascular healing and extend the long term benefits of vascular interventions for more patients?

Submitted by (@societyforvascularsurgery)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Compelling Question (CQ)

Details on the impact of addressing this CQ or CC :

­The response to vascular injury, whether it be catheter interventions, bypass surgery, or chronic implants, is a reactive process characterized by inflammation, cell proliferation, and fibrosis leading to failure. Better understanding of the mechanisms of vessel remodeling, and restoring homeostasis, is needed to improve prediction, develop and translate new treatments. This remains the leading scientific problem in vascular medicine and surgery. New approaches such as proteomics, lipidomics, molecular imaging offer new opportunities in this realm.

Name of idea submitter and other team members who worked on this idea : Society for Vascular Surgery

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0 net votes
1 up votes
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Goal 1: Promote Human Health

Theoretical division of NHLBI

Many functional physiology, cellular physiology , electrophysiology, and other aspects are amenable to rigorous mathematical methods.NHLBI lacks a theoretical division where IDEAS expressed mathematically make testable predictions at multi scale levels. NHLBI LACKS A THEORETICAL DIVISION- although history has shown that virtually all original ideas have a mathematically expressible foundation, particularly when dynamic, ...more »

Submitted by (@sjk000)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

the impact is obvious in the sense that predicton based on theory can lead to new discovery

Name of idea submitter and other team members who worked on this idea : Sandor j Kovacs

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12 up votes
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Goal 2: Reduce Human Disease

Determining the significance of variants of unknown significance

Variants of unknown significance (VUS) confound the value of genetic testing. We need to improve our understanding of the clinical significance of VUS so we can more definitively re-classify them as pathologic or benign variants.

Submitted by (@nhlbiforumadministrator)

Is this idea a Compelling Question (CQ) or Critical Challenge (CC)? : Critical Challenge (CC)

Details on the impact of addressing this CQ or CC :

Next gen sequencing and clinical genetic testing are becoming a more frequent component of clinical care. Not infrequently a VUS result is returned providing little clinical value to the patient. Determining the significance of these variants will be extremely valuable to patients undergoing genetic testing.

Feasibility and challenges of addressing this CQ or CC :

Bioinformatics and big data infrastructure will mature over the next several years to allow us to record VUS results, follow patients longitudinally, aggregate data, and ultimately determine the significance of VUS.

Name of idea submitter and other team members who worked on this idea : NHLBI Staff

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6 up votes
15 down votes
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