Showing 24 ideas for tag "patient"

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.

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

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 »

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

Restoring Balance to Stroke Prevention in Older AFib Patients

Improving Tools for Anticoagulation Decision-Making

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

Details on the impact of addressing this CQ or CC

AFib increases stroke risk by five-fold and doubles the risk that a stroke will result in permanent disability. While oral anticoagulation (OAC) is highly effective at reducing stroke risk, elderly patients are often under-anticoagulated. This is in part due to an under-appreciation of the stroke risk associated with AFib and the tendency of some health care professionals to prioritize perceived bleeding risk over stroke prophylaxis. Because current bleeding risk assessment tools are imperfect and largely unable to predict patients who are likely to have bleeding complications, they are often not utilized—or if used, do not truly predict which patients are at risk of a bleed. An improved bleeding risk tool is critical to improved risk assessment in the elderly. That bleeding risk tool should then be combined with the stroke risk tool for single risk stratification to streamline anticoagulation decision-making.

Feasibility and challenges of addressing this CQ or CC

Developing effective integrated risk assessment tools is feasible only if there is consensus on the validity of the clinical information being provided. The approach to this critical challenge is two-fold. First, needed research that improves the reliability of bleeding risk assessment in the elderly should be pursued. Second, stroke and bleeding risk tools should be combined into a single risk stratification tool. This will require significant investment and focus, but the resulting bleeding risk assessment combined with the accepted CHA2DS2-VASc score, would significantly impact the 40 - 60% of patients who are currently not on an anticoagulant and are at increased risk of stroke and death.

Name of idea submitter and other team members who worked on this idea AFib Optimal Treatment Task Force

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11 net votes
19 up votes
8 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)?

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

Voting

14 net votes
19 up votes
5 down votes
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Goal 3: Advance Translational Research

Brief vs. teach-to-goal interventions in teaching patients with COPD to use inhalers

What is the comparative effectiveness of brief interventions to teach patients respiratory inhaler use (e.g., verbal and written instructions) vs. teach-to-goal interventions (brief interventions plus demonstration of correct technique, patient teach-back, feedback, and repeat instruction if needed) on respiratory inhaler technique and patient-reported outcomes (symptom frequency, activities of daily living, quality of... more »

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

Details on the impact of addressing this CQ or CC

Respiratory inhalers come in a staggering array of types, contents, and methods of use. It is not uncommon for the COPD patient to use two or more types of inhalers each day. The misuse of the application of these devices is rampant, due to confusion, forgetfulness, or lack of proper education in their use. If multiple inhalers are used by the patient, many of them must be used in a particular order, and the inhalation methods may will be vastly different.
Understanding on the part of the patient and/or caregiver begins with the initial instruction in the use of inhalers by medical personnel. They must find, and use, methods of instruction that are understandable and retainable by the patient.

Feasibility and challenges of addressing this CQ or CC

The study of comparing the two type of instruction is entirely feasible, while the challenges lie with studying a large enough sample of patients to encompass the ranges of COPD stages, mental capacity, and degree of compliance of the patients.

Name of idea submitter and other team members who worked on this idea Jim Nelson - Patient, Arizona State Advocacy Captain

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13 net votes
16 up votes
3 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)?

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

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13 net votes
16 up votes
3 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?

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

Voting

12 net votes
16 up votes
4 down 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.

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

Voting

11 net votes
15 up votes
4 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)?

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

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9 net votes
12 up votes
3 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 »

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
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.

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

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 »

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 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.

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 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?

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
0 down votes
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