Goal 2: Reduce Human Disease

Expanding Patient Input and Collaboration

NHLBI should incorporate more patient input in the institute’s decision-making process and consider more collaboration with the Patient-Centered Outcomes Research Institute.

Submitted by (@golan0)

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

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2 net votes
2 up votes
0 down votes
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Goal 3: Advance Translational Research

More involvement of patients and patient advocates in the process of research

More involvement of patients and patient advocates in the process of research at the NHLBI should be encouraged.

Submitted by (@nhlbiforumadministrator)

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

Name of idea submitter and other team members who worked on this idea : Research Advocacy Committee, American Thoracic Society

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1 net vote
1 up votes
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Goal 4: Develop Workforce and Resources

Creating research infrastructure through supporting the development of biorepositories and registries for rare lung diseases

Progress in rare lung diseases, such as interstitial lung diseases, has been hampered by a lack of patient-derived samples in large enough quantities or high-enough quality for systematic study. This is due to the inability of individual centers to recruit enough patients, and because of the varied samples each center obtains. Collecting, preparing, and storing such samples is not fundable by the NHLBI because it is not ...more »

Submitted by (@docew0)

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 addressing this Critical Challenge cannot be underestimated. Researchers throughout the country and the world are hamstrung by not being able to test hypotheses on reliable patient-derived samples. By supporting the creation of a biorepository of well-annotated, clinically-phenotyped biological samples from patients with interstitial lung disease, the scientific community will be able to attack many hypotheses simultaneously rather than individually as is currently the case. Utilizing an 'honest broker'-type system, researchers whose ideas have scientific merit will be able to access this trove of samples and data to confirm (or refute) their hypotheses. This type of resource does not exist but is critically needed.

Feasibility and challenges of addressing this CQ or CC :

Currently, few institutions care for a large proportion of interstitial lung disease patients nationwide. These institutions have already shown an ability to work together in other NHLBI-sponsored projects, such as IPFnet and LTRC. Thus, this project is feasible. Challenges that will need to be overcome include determining the appropriate samples to be collected, the centers that will participate in collecting samples and data, and identifying individuals or programs that can serve as an 'honest-broker' for this type of platform. However, engaging research partners among various centers has already been documented, with industry, academia, and patient advocacy groups coming together to support such an initiative.

Name of idea submitter and other team members who worked on this idea : Eric White

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-1 net votes
11 up votes
12 down votes
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Goal 3: Advance Translational Research

Definitive Evidence of the Effectiveness of Pulmonary Rehabilitation

What is the clinical effectiveness of pulmonary rehabilitation in reducing hospital admissions and readmissions, improving health outcomes such as exercise tolerance and dyspnea, and positively impacting patient centered outcomes. Does this effectiveness vary based on the types of settings rehab is conducted in, urban vs rural environments, the components to the program, the timing of the program and the overall support ...more »

Submitted by (@gacdk0)

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

Details on the impact of addressing this CQ or CC :

Pulmonary rehabilitation is a critical component in the treatment of COPD patients but several barriers persist that have resulted in very limited access to rehab, low referral rates for eligible patients and limited standardization of best practices within the rehab facilities that do exist. Large, definitive studies accounting for patient subgroups, site characteristics and program components can generate the level of evidence needed to expand access, educate providers and improve referral systems and create quality programs. This level of evidence is necessary to change policy to properly value the role of pulmonary rehabilitation and to convince integrated health systems in a value based market that pulmonary rehabilitation is beyond a doubt, a requirement of providing quality COPD care.

Name of idea submitter and other team members who worked on this idea : Grace Anne Dorney Koppel, COPD Foundation Board of Directors, COPD Patient Advocate

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9 net votes
12 up votes
3 down votes
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Goal 3: Advance Translational Research

Best Practices in the ICU

What ICU organizational factors, such as staffing, protocols, or telemedicine, best facilitate adherence to evidence-based practices and improve patient outcomes?

Submitted by (@nhlbiforumadministrator)

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

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

Voting

-1 net votes
9 up votes
10 down votes
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Goal 2: Reduce Human Disease

Critical Challenge

• One of the most important public health issues the Nation faces is the rising incidence of heart failure. HF incidence rates have risen faster than predicted. The prevalence will increase as better and more therapy becomes available. While heart failure is the biggest ticket item in the Medicare budget, the cost to society will increase more than it has already. But much HF can be prevented or onset prolonged. Investing ...more »

Submitted by (@tsansone)

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

Details on the impact of addressing this CQ or CC :

See attached file

Feasibility and challenges of addressing this CQ or CC :

Critical Challenge

Name of idea submitter and other team members who worked on this idea : ASH Officers, Committee Members

Voting

-3 net votes
4 up votes
7 down votes
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Goal 2: Reduce Human Disease

Non-Adherence of Patients with Chronic Respiratory Diseases

There are various reasons responsible for patients’ non-adherence. One of them is insufficient or lack of education about medications and equipment required for their treatment.

Submitted by (@vlady.rozenbaum)

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

Details on the impact of addressing this CQ or CC :

There is a critical need to develop uniform guidelines and handouts addressing the confusion over the proper use of medications (particularly inhalers) and equipment (i.e. oxygen). Improper use leads to diminished or no benefit, frustration, and, ultimately, even to a patient's decision to stop the treatment.

Feasibility and challenges of addressing this CQ or CC :

This is an issue that has been universally acknowledged for a number of years. With the help of patient focus groups, convened at the NHLBI, national pulmonological conferences, or at local venues around the country, appropriate materials can be created to benefit patients and reduce a huge burden on nation's economy due to decreased productivity and increase in hospital admissions.

Name of idea submitter and other team members who worked on this idea : COPD-ALERT

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0 net votes
20 up votes
20 down votes
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Goal 4: Develop Workforce and Resources

A fully qualiftied EHR (electronic health record) as defined in ACA/HITECH in the hands of patients reduces medical errors

No physician or hospital has an active data management system at point of care. coding is done by third parties and not the diagnosing physician. The Test with MED-O-CARD shows that an integrated Diagnostic/Medication Algorithm allows a patient and his physicians to run and view instant data analytic. This system can be expanded scientifically without pushing the patient again aside. Patient inclusion will increase quality ...more »

Submitted by (@g.pollanz)

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

Details on the impact of addressing this CQ or CC :

Reduces medical errors / forces CPOE / shows instant drug inconsistencies even during surgery and intensive care / forces patient compliance

Feasibility and challenges of addressing this CQ or CC :

Tests with MED-O-CARD at Frankfurt University Hospital show the need of patient education. US providers ignore the legal mandate of the ACA and of HIPAA to transfer all electronic data to the patient. Violation of the law seems a cavalier deli ct with providers and has hardly any consequences.

Personal medical data collected from all providers plus monitoring and mobile apps data collected by the patient plus DNA data on one secured DB in the hands of a patient enables MICRO Analytic (of one patient) and allows entirely new challenges of MACRO Analytic (Population Management) without being dependent on the commercial considerations or providers who (mostly illegal) sell data for predefined pharmacological studies. MED-O-CARD's patient data will not be sold but shall become property of the participating patients and thus allows the free-of-charge creation of scientific BIG DATA for R&D

Name of idea submitter and other team members who worked on this idea : Prof. Thomas Vogl, Frankfurt University Hospital; others, Israel, German and US computer teams

Voting

-13 net votes
7 up votes
20 down votes
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Goal 3: Advance Translational Research

treating sleep apnea without a nose or facial mask

I am lucky to still be alive. I developed heart failure at 41. I turn 60 this month. For the last five years, doctors have tried to get me on a CPAP. I have told them that I'd rather die. I have absolutely no interest in sleeping with a darth vader mask or some strange thing strapped to my nose. Furthermore I had sinus surgery 30 years ago that only partiallly cleared my sinus passage. So forcing air up my nose is very ...more »

Submitted by (@chriscage)

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

Details on the impact of addressing this CQ or CC :

If my doctors are correct, patients like myself are at high-risk. Before we die, we will need expensive hospital or nursing home based care. If some one can develop a mask or device that will work, he or she will literally save lives and reduce the financial burden on families, communities and hospitals.

Feasibility and challenges of addressing this CQ or CC :

This shouldn't be difficult research. We're talking about an air delivery system, not a cure for cancer or AIDS. The challenge is that this is not a prestige issue. There won't be a lot of research centers spending on on this.

 

Yet it could save lives and reduce healthcare costs. Maybe this research could be conducted as a joint project of associations for ENT doctors, cardiologists and dentists.

Name of idea submitter and other team members who worked on this idea : Mary Crystal Cage

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26 net votes
43 up votes
17 down votes
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Goal 2: Reduce Human Disease

Predict the needs for inter and intra-hospital transfer for acute care surgery patients with respiratory failure

Density mapping of the need and flow of patients requiring acute care surgery vis-a-vis inter-facility transfer, care hand-off failures, post-acute care resource mismatch to articulate a funding plan resource allocation and development akin to what has been done for trauma care.

Submitted by (@greg.martin)

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

Name of idea submitter and other team members who worked on this idea : Society of Critical Care Medicine Executive Committee/Council

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0 net votes
2 up votes
2 down votes
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Goal 3: Advance Translational Research

Generalizing patient education to address co-morbidities

How do we generalize our educational efforts such that multiple co-morbidities and their self-care can be addressed?

Submitted by (@kdeit1946)

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

Details on the impact of addressing this CQ or CC :

Patients with with many co-morbidities, many times have to weigh the benefits of a particular medication for one issue, with the downside of what it may do to another issue. There needs to be much more education in this area.

Name of idea submitter and other team members who worked on this idea : Karen Deitemeyer, COPD Foundation State Captain Program

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

The impact of a COPD patient education program

What is the impact of an organized, comprehensive, COPD patient education program, on medication delivery effectiveness, care plan adherence, appropriate use of LTOT and Pulmonary Rehabilitation? Metrics could include incidence and severity of exacerbations, and health care resource consumption.

Submitted by (@dprieto)

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

Voting

11 net votes
15 up votes
4 down votes
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