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

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)

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11 net votes
15 up votes
4 down votes
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Goal 3: Advance Translational Research

Effectiveness of three smoking cessation approaches

What is the comparative effectiveness and cost effectiveness of counseling plus nicotine replacement vs. counseling plus bupropion vs. counseling plus varenicline on smoking cessation rates, patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations), and COPD and non-COPD morbidity/mortality?

Submitted by (@jkowalski)

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

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1 net vote
4 up votes
3 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 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 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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2 up votes
2 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

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-1 net votes
9 up votes
10 down votes
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Goal 1: Promote Human Health

Using video to replace the boring highly ineffective drug monographs that accompany prescrptions

Estimates are that less than 2% of medication monographs are actually read by patients. Of those 2% only 35% fully comprehend the material. Why not use video and simpler methods to educate patients about their medicine. By coding QR tags to direct patients to education websites, we solve the drive through phenomena, the health literacy issue, and the language barrier.

Submitted by (@dburand)

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 use of printed education material in educating patients is quickly becoming obsolete. How do we match the need for knowledge (more than 65% of patients surf the web before asking for professional assistance from healthcare professionals), to effective and useful patient friendly materials.

Feasibility and challenges of addressing this CQ or CC :

Control over the website is instilled in the QR code. Language choice can be an easy fix. QR codes are easily created and can be printed on a patient's receipt without compromising PCI.

Name of idea submitter and other team members who worked on this idea : Dave B

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4 up votes
16 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

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 up votes
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Goal 2: Reduce Human Disease

Smartphone medical apps

A great potential benefit exists for the use of smartphone medical apps for medical doctors, patients, and trainees. NHLBI may help support to test and/or develop smartphone apps in clinical studies and medical training.

Submitted by (@nhlbiforumadministrator1)

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

Details on the impact of addressing this CQ or CC :

Facilitating and improving patient care, medical staff training, cost-saving, etc.

Feasibility and challenges of addressing this CQ or CC :

Wide use of smartphones and fast technology development.

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

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30 net votes
54 up votes
24 down votes
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Goal 3: Advance Translational Research

Effect of short-term vs. chronic pulmonary rehabilitation on patient-reported outcomes

What is the comparative effectiveness of short-term vs. chronic (indefinite) pulmonary rehabilitation on patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Submitted by (@scerreta)

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

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14 net votes
19 up votes
5 down votes
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