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

The use of administrative and billing data in COPD care quality improvement

What is the validity of administrative/billing data to evaluate the quality of COPD care as part of quality improvement initiatives? What care practices can be assessed using these data?

Submitted by (@ngrude)

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 : Nina Bracken, COPD Foundation advocate

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2 net votes
2 up 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 up 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

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

Leverage Information Technology to Improve Patient Safety in Surgery

Progress toward a six-sigma level of safety (already achieved in commercial aviation) has been slow in medicine and surgery. The best cardiac surgery program operates at only 3.5 sigma level. In order to acceletate this process, it is critical to leveage recent advances in information technology, including but not limited to natural language processing (NLP), advanced speech recognition, artificial intelligence.

Submitted by (@marcozenati)

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

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-8 net votes
3 up votes
11 down votes
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Goal 2: Reduce Human Disease

Understanding of chronobiological systems

We know that all life functions are based on circadian and other rhythms; chronobiological systems are interdependent in intricate ways. Disturbances and disorders in one part of a system may affect other vital systems in unexpected but far-reaching ways. Many aspects of circadian rhythms and sleep-wake regulation in normal, healthy humans have been charted. Much of the knowledge thus gained is assumed to be valid also ...more »

Submitted by (@nma120)

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

Details on the impact of addressing this CQ or CC :

As research on the extrinsic Shift Work Disorder shows, disturbances of the normal person’s sleep-wake cycle have consequences. These may include excessive daytime sleepiness, increased risk of traffic and other accidents, dysregulation of metabolic and other systems, obesity, increased risk of cancer, cardiovascular diseases, mood disorders and other diseases. Normal people trying to function on an abnormal schedule may develop conditions that lead to disability or death. Intrinsic CSWD patients suffer many of the same conditions as well as others.

 

These patients desperately need answers: Why am I like this, Do I dare have children, Will it get worse as I age, Can anything be done in addition to light boxes, scototherapy and melatonin, What is really the best timing in use of these treatments, Will I get disability?

 

Research on these patients will likely lead to discoveries that could be the target for future studies, thus impacting the modern fields of sleep and circadian rhythms research.

Feasibility and challenges of addressing this CQ or CC :

The intrinsic CSWDs are:

 

1) Lifelong DSWPD, delayed sleep-wake phase disorder

2) Adolescent DSWPD

3) ASWPD, advanced sleep-wake phase disorder

4) ISWRD, irregular sleep-wake rhythm disorder

5) Blind Non-24, N24SWRD, non-24-hour sleep-wake rhythm disorder in the blind

6) Sighted Non-24, N24SWRD in the non-blind.

 

I have listed 6 disorders; the usual number is 4. The first 2 on my list are usually combined, as are the last 2.

 

Some of the challenges, for different age groups and degrees of severity, are to:

--Find the causes of the disorders that are not yet explained

--Examine genetics and heritability

--Differentiate teens’ DSWPD as adolescent or persistent type

--Discover why adult DSWPD often precedes the development of Non-24 in sighted people

--Validate the use of light therapy, dark therapy and melatonin, including detailed recommendations for the timing and dosage of each of them

--Find other, more reliable, treatments

--Develop simple tests for determining persistent internal circadian desynchronization in an individual.

 

 

Some of the disorders have been explained, in whole or in part. There is great need for work with, at least, the following groups of patients:

-Adult DSWPS

-Pre-puberty children w/ DSWPS

-Adult sighted N24

-Pre-puberty sighted children w/ Non-24

 

Of these, adults with DSWPD are, of course, the most numerous. Research on that disorder may lead to results of interest for N24, these disorders being closely related.

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Goal 2: Reduce Human Disease

Patient Registries

Researchers at academic institutions, research foundations, and industry are poorly managing clinical data about patients they treat and enroll in clinical trials. A better coordinated patient registry effort related to heart, lung, and blood disease patients would yield long term benefits for clinical research and clinical care improvement.

Submitted by (@skrenrich)

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 : Cystic Fibrosis Foundation

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5 net votes
8 up votes
3 down 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

Palliative and hospice care for COPD patients

Does palliative care and/or hospice care as practiced across communities improve end-of-life care for COPD – specifically, does it reduce the burden of symptoms, improve HRQoL and satisfaction, reduce utilization in last 6 months of life (i.e. hospital visits, cost, invasive ventilation use, etc), improve the end-of-life experience, and increase the concordance of place of death to expressed patient preferences?

Submitted by (@k.willard)

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

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12 net votes
16 up votes
4 down votes
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Goal 2: Reduce Human Disease

Reducing Patient Delay Times with ACS especially STEMI

The major barrier to further reducing mortality from ACS in particular STEMI remains patient delay. Symptoms are either ignored or misinterpreted and this behavior has not changed despite community education efforts. The advance of social media as well as smartphones and other internet based tools suggests that there is a new opportunity to potentially help change human behavior.

Submitted by (@dayam0)

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 current patient delay time from symptom onset to seeking medical care is 2 hours. If we could reduce this to 1 hour we could further reduce ACS especially STEMI related mortality

Feasibility and challenges of addressing this CQ or CC :

The use of social media and smartphones to actively change public behaviors when experiencing potential medical conditions should be possible. Companies like Google and Facebook that have an interest in health could be approach to partner in this effort

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

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0 net votes
2 up votes
2 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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2 up 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

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-3 net votes
4 up votes
7 down votes
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