Goal 4: Develop Workforce and Resources

DEVELOPMENT AND SUPPORT FOR APHERESIS MEDICINE INVESTIGATORS

The apheresis medicine encompasses treatment of numerous diseases many of which are directly related to blood, lung and heart. However, there are very limited opportunities for training young investigators in basic and translational research related to Apheresis Medicine. There is a need to promote Apheresis Medicine as a viable field of research for junior and established investigators. The influx of well-trained junior ...more »

Submitted by (@zbigniew.m.szczepiorkowski)

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

Details on the impact of addressing this CQ or CC :

Therapeutic apheresis is the process of transiently removing whole blood from the body, separating it into various components (e.g., cells, plasma, proteins, antibodies, antigen-antibody complexes, lipids, etc.), removing those components that contribute to disease, and then returning the remaining blood with possible addition of a blood component to the body.

 

Hundreds of thousands of apheresis procedures are being performed every year in the US. Many of these procedures are life-savings while others are likely to be of limited benefit to patients and healthcare system at large. There is lack of good understanding pertaining to basic mechanisms of apheresis and optimal ways of applying apheresis to the improvement of underlying conditions as well as to the ability of apheresis to enhance other treatment modalities. This in turn is caused by significant shortage of well-educated and trained physician scientists willing to address basic science and translational-clinical questions related to applications of apheresis in clinical practice.

 

Currently there are no specific mechanisms for training such individuals. Utilization of and integration with existing educational/training programs, such as T32 grants, K23/K24/K25 grants, institutional K12 awards and CTSA educational programs would likely result in the cadre of junior investigators who can tackle questions related to basic mechanisms as well as clinical approaches to treating diseases using apheresis strategies.

Feasibility and challenges of addressing this CQ or CC :

Feasibility: Incorporation of apheresis medicine training into currently available resources is likely to be highly feasible. This training can be provided across many medical specialties including hematology, transfusion medicine, cardiology, pulmonology and others. Inclusion of basic scientists involved in research of blood disorders, lung and heart disorders, as well as immunology will expand the outreach. Identification of individuals interested in pursuing research in apheresis medicine might be accomplished on different levels of training starting with medical school, internship, residency and fellowship as well as early years of medical career in a variety of medical specialties.

 

Challenges: The primary challenge is related to perception. Apheresis has an undeserved reputation as an "old" science; one that in recent years has been overtaken at times by newer medical treatments. Yet it still is the only and often life-saving treatment for certain conditions. Apheresis remains the go-to procedure for treating many common and rare maladies alike, such as TTP, and new treatment indications are being added. Although many specialists like hematologists, neurologists, nephrologists see the evidence and benefits of therapeutic apheresis in their everyday work, the progress of Apheresis Medicine as a medical specialty has been generally slow. The other major challenge is lack of funding of basic research and translational research related to Apheresis Medicine.

Name of idea submitter and other team members who worked on this idea : Zbigniew M. Szczepiorkowski, Yanyun Wu on behalf of ASFA

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108 net votes
127 up votes
19 down votes
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Goal 4: Develop Workforce and Resources

Community education on phenotypic expressions of sickle cell disease

How effective are current community education techniques on the various phenotypic expressions of SCD?

Submitted by (@sicklecellwarrior)

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

Details on the impact of addressing this CQ or CC :

If parents knew what to expect with precision they could be proactive in care

Name of idea submitter and other team members who worked on this idea : Sickle Cell Warriors, Inc. community members

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17 net votes
27 up votes
10 down votes
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Goal 2: Reduce Human Disease

Transforming Clinical Practice through Patient-Centered Medical Nutrition and Lifestyle Education

The fact that diet contributes significantly to prevention and treatment of disease is now a foregone conclusion. National and international guidelines offer evidence based recommendations advocating nutrients, foods and eating patterns that are most closely associated with reduced risk. Patients assume that physicians are knowledgeable regarding the role of diet in health and that they are trained to counsel patients ...more »

Submitted by (@lvanhorn)

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

Details on the impact of addressing this CQ or CC :

AHA/ACC guidelines subsequent to the NHLBI ATPIII all provide diet-related recommendations for improving public health that, if followed, could offer tremendous benefits in reduced disability, death and health care costs. However, imperative to the implementation of these life-saving recommendations, is an informed and educated provider base that is skilled in: assessment of patients’ diets and eating behaviors, evaluation of possible risk factor contributors and initiation of diet counseling or referral to a qualified nutritionist.

 

Nowhere is the opportunity greater to assess, evaluate and offer guidance towards improvement of key diet behaviors than in primary care. Patients perceive physicians as credible, respected sources of nutrition counseling. Physician endorsement of diet and lifestyle change favorably influences patient adherence. Research to evaluate patient-centered medical education and training programs is needed to evaluate and compare patient perception, health impact and health outcomes of these translational nutrition efforts. Ultimately, the goal is to further calculate and quantify the economic and personal benefits that accompany these strategies in order to implement transformed medical education aimed at preventive strategies.

Feasibility and challenges of addressing this CQ or CC :

This is a major challenge due to current medical training focused on diagnosis and treatment rather than prevention. Research is needed to demonstrate cost/benefit of transformative education and training that shifts the focus from treatment to prevention. Successful outcomes can provide preliminary evidence needed to promote a paradigm shift across -medical schools and allied health professions with the ultimate goal of - improving medical practice and quality of life. Evidence is needed that documents patient-centered impact resulting from this training and actual practice. Proposed is a comprehensive, team science approach to testing the results of nutrition and lifestyle medicine in primary care and the biomedical, behavioral and economic impact derived from it.

This represents an ambitious task requiring an academic medical center environment that not only has the educational aspect in place but also the capacity to provide the translational effort at the bedside and in outpatient settings to allow measurement of results. It requires leadership in multiple arenas and coordination between education and clinical application that are crucial to successful implementation. It further requires leadership and expertise in big data, economics, biostatistics and the accompanying technology required to

assess, analyze and report all of the aspects and components inherent in a project of this magnitude.

Name of idea submitter and other team members who worked on this idea : Linda Van Horn, PhD, RD

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3 net votes
7 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.

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 4: Develop Workforce and Resources

Training of Clinical & Translational Scientists

Although the NCRR and NIGMS used to have a mechanism to train new generation of clinical & translational scientists, this program was stopped. Why?

What is the possibility of other institutes to come up with the priority of funding resources in this regard?

Submitted by (@dkagr0)

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

Details on the impact of addressing this CQ or CC :

In view of the health care models, strong control of insurance companies in determining the remuneration, lack of protective time for qualified clinicians to continue their research, no incentive to the institute for promoting such activities, lack of available tenure-track jobs, pool of effective and well-trained clinical & translational researchers is decreasing rapidly. Even though NIH invests resources to train MD-PhD students, a very minor pool of these graduates continue curiosity and passion in advancing new knowledge and discovering newer approaches.

Feasibility and challenges of addressing this CQ or CC :

1. Additional resources must be developed by NHLBI, NIAID, NIDDK and other major institutes to support this endeavor.

2. Institutes/medical schools who provide protective time to their faculty to continue their efforts in clinical & translational research, must be acknowledged and incentivized.

3. There has been no effective way of measuring outcomes from such investments. All of us must take ownership in utilizing the resources more effectively and more productively.

Name of idea submitter and other team members who worked on this idea : Devendra K. Agrawal, PhD

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31 net votes
38 up votes
7 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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-12 net votes
4 up votes
16 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
0 down 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 4: Develop Workforce and Resources

Sickle cell education for healthcare providers

Although sickle cell was first described more than 100 years ago and more than 100,000 individuals in the US are living with sickle cell disease, healthcare providers still lack basic knowledge of the key components in providing care for individuals with sickle cell. This often leads to poor health outcomes including stigmatization of patients with sickle cell seeking care. Evidenced-based curriculum should be available ...more »

Submitted by (@coretta.jenerette)

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 : International Association of Sickle Cell Nurses and Physician Assistants, Inc.

Voting

18 net votes
21 up votes
3 down votes
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Goal 4: Develop Workforce and Resources

Training Biomedical Research Experts for Life Beyond the Ivory Tower

Only 10-20% of graduates from PhD programs in the biomedical sciences will pursue a scientific career in the traditional tenure track academic model. This is in part due to a mismatch between a large number of highly qualified scientists and the relatively small number of tenure track positions available. Instead of viewing the careers of the 80-90% as "alternative careers", we have to accept that in fact the traditional ...more »

Submitted by (@jalees)

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 majority of trainees in NHLBI graduate and postdoctoral training programs will likely pursue a diverse spectrum of careers such as scientists in the biotech and pharmaceutical industry, educators, health and science journalists, editors, patent lawyers or health/science consultants in the world of finance and politics.

 

Most NHLBI T32 training grants are awarded to academic institutions and the mentors tend to be tenure-track or tenured academics with NIH R01 funding. The question we have to address is whether these traditional training programs and mentors are well-suited to advise and prepare trainees for careers outside of academia.

 

The NHLBI should fund novel training programs that require or encourage involving mentors outside of academia and funding training projects that allow trainees to work in industry, publishing, writing, politics, non-profits and other non-traditional areas related to heart, lung and blood research. This will prepare trainees for future careers and increase their likelihood of obtaining satisfying jobs.

Feasibility and challenges of addressing this CQ or CC :

Such newer T32 training programs will require a rethinking of the goals of training. There will be challenges for how to assess the quality and identify benchmarks of success for the training programs. Instead of merely looking at the number of publications by a trainee, one should also consider the impact they will make on society by using their expertise in biomedical research to improve education, health and science reporting, political and financial decisions, etc.

 

One should also consider awarding such training programs jointly to multiple institutions and encourage sharing of trainees. For example, a T32 program that wants to train future science writers and journalists with expertise in cardiovascular medicine would encourage their trainees to visit multiple partner institutions with expertise in cardiovascular medicine and in journalism/writing during their training period.

 

Instead of spending two years in one lab under a single mentor working on one or two projects, non-traditional T32 programs would encourage exposure to multiple projects, mentors, etc.

Name of idea submitter and other team members who worked on this idea : Jalees Rehman

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0 net votes
4 up votes
4 down votes
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Goal 2: Reduce Human Disease

Education of Doctors about Sarcoidosis

It is very difficult to find doctors that are educated in Sarcoidosis. Some think its not big deal, patients are hypochondriacs, looking for attention etc. How do we get the doctors to learn more about Sarcoidosis to better help their patients who live with this.

Submitted by (@lindajohns)

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

Details on the impact of addressing this CQ or CC :

I think that patients with Sarcoidosis with better informed doctors would receive better treatment ideas and options.

Feasibility and challenges of addressing this CQ or CC :

You have to start somewhere. Since doctors are who will help those with Sarcoidosis I feel that is where it needs to start.

Name of idea submitter and other team members who worked on this idea : Linda Johns

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-6 net votes
8 up votes
14 down votes
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