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)

Voting

14 net votes
19 up votes
5 down votes
Active

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.

Voting

1 net vote
1 up votes
0 down votes
Active

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

Voting

0 net votes
20 up votes
20 down votes
Active

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)

Voting

12 net votes
16 up votes
4 down votes
Active

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

Voting

-1 net votes
11 up votes
12 down votes
Active

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

Voting

1 net vote
1 up votes
0 down votes
Active

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

Voting

9 net votes
12 up votes
3 down votes
Active

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

Voting

-12 net votes
4 up votes
16 down votes
Active

Goal 3: Advance Translational Research

Use of symptoms vs spirometry in increasing patient and provider adherence to guidelines

What is the comparative effectiveness of using symptoms vs. spirometry in increasing patient and provider adherence to COPD treatment guidelines and patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Submitted by (@hgussin)

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

Details on the impact of addressing this CQ or CC :

COPD is underdiagnosed. The lack of recognition of COPD risk by physicians and patients themselves is well known, with many undiagnosed COPD patients presenting for the first time with late stage COPD. Currently used cut-points based on a fixed ratio of FEV1/FVC may overestimate the number of elderly patients with COPD, particularly with mild disease, because of changes in lung volumes with aging. It has been suggested that using a cut-point based on the normal distribution of FEV1/FVC values may decrease the misclassification rate. Other strategies have been proposed for risk assessment as adjuncts to diagnostic classification (e.g., Fragoso et al. J Am Geriatr Soc 2008, 56:1014-1020). Pertinent references: Guideline #1 in Qaseem et al., strong recommendation, moderate-quality evidence; GOLD, 2008 and the 2005 American Thoracic Society/European Respiratory Society Task Force Report, standards for the diagnosis and management of patients with COPD.

Although there are ample guidance to help providers identify and evaluate patients likely to have earlier stage COPD, few are referred to spirometric testing. Subsequent spirometry provides a good working yield of true positives, which is frequently superior to pre-test probabilities of other, more complex and expensive medical tests commonly ordered for other conditions (colonoscopy,lung cancer), why is it so much more difficult to provide spirometry? COPD will remain undertreated as long as it remains underdiagnosed.

Name of idea submitter and other team members who worked on this idea : Helene Gussin, PhD

Voting

9 net votes
12 up votes
3 down votes
Active

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
Active

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

Voting

30 net votes
54 up votes
24 down votes
Active

Goal 3: Advance Translational Research

The effect of continuous LTOT in COPD targeting fixed oxygen flow rates vs. oxygen saturation on patient-reported outcomes

What is the comparative effectiveness of prescribing continuous LTOT in COPD that targets fixed oxygen flow rates vs. oxygen saturation on patient-reported outcomes (symptom frequency, activities of daily living, quality of life, sleep quality, exacerbations)?

Submitted by (@amutso)

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 : Amelia Mutso, PhD, collaborator with COPD Foundation

Voting

13 net votes
16 up votes
3 down votes
Active