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What do Immunology and Impostor Syndrome Have In Common?

As an Advanced Heart Failure and Transplant Cardiology Fellow this year, transplantation immunology is an important part of my curriculum. While I try to stay up-to-date on the latest advances in care in heart failure, cardiogenic shock, and mechanical circulatory support, I recently took a deeper dive into the fascinating history of organ transplantation and immunology – which brought me to Sir Peter B. Medawar, widely regarded as the “father of transplantation”.

Sir Peter Brian Medawar

Sir Peter Brian Medawar: https://www.thefamouspeople.com/profiles/peter-medawar-7366.php

Medawar was a Brazilian-born British zoologist who received (with Sir Frank Macfarlane Burnet) the Nobel Prize for Physiology or Medicine in 1960 for developing and proving the theory of acquired immunological tolerance. His early training and studies in England were focused in zoology and comparative anatomy, and his initial research was on connective tissue cells and tissue culture.

He became interested in skin grafting during World War II after witnessing military pilots sustaining severe burns in plane crashes and moved to Glasgow to continue this work for the Medical Research Council. Over the 1940s-early 1950s, he performed and published a series of experiments on the behaviors of skin autografts and allografts in burn victims. He demonstrated that skin allografts (i.e. homografts), although initially successful, were rejected within two weeks. In his experiments, when a second allograft from the same donor was attempted, the allograft was rejected much more quickly. Thus, he established the idea that allograft reactions were immunological. In the conclusion of their paper The Fate of Skin Homografts in Man, Gibson and Medwar state that “The time relations of the process, the absence of a local cellular reaction, and the accelerated regression of the second set of homografts suggest that the destruction of the foreign epidermis was brought about by a mechanism of active immunization.”

He furthered the ideas of genetically determined immunologic systems and immunologic tolerance through additional studies in different model organisms, including cattle and mice. In 1951, he tested the effects of cortisone on survival of skin homografts in rabbits and found that the daily subcutaneous administration of 10 mg cortisone acetate to adult rabbits delayed graft healing and vascularization and lengthened the life of skin homografts by 3x-4x!

Figure 3 from Billingham RE, Krohn PL, Medawar PB. Effect of Cortisone or Survival of Skin Homografts in Rabbits. Br Med J. 1951

Figure 3 from Billingham RE, Krohn PL, Medawar PB. Effect of Cortisone or Survival of Skin Homografts in Rabbits. Br Med J. 1951. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2068993/pdf/brmedj03547-0003.pdf

As excited as I was to read about this fascinating history of immunology and transplantation, I was even more interested to find that Medawar was a supporter of women in science (#HeForShe). In 1979, he published a book called Advice to a Young Scientist, a book he says is “the kind of book I myself should have liked to have read when I began research…” In the eight short pages of his book’s fifth chapter entitled “Sexism and Racism in Science”, he addresses the concepts of impostor syndrome, gender equality in academic medicine, and the frequent invisibility of women in science – all concepts still at the forefront of our current dialogue 40 years later.

Excerpt from Advice to a Young Scientist by Peter B. Medawar

Excerpt from Advice to a Young Scientist by Peter B. Medawar

The history of medicine is full of fascinating personalities and stories like this one, and to quote Medawar himself, “I do not know any scientist of any age who does not exult in the opportunity continuously to learn.”

 

The views, opinions and positions expressed within this blog are those of the author(s) alone and do not represent those of the American Heart Association. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them. The Early Career Voice blog is not intended to provide medical advice or treatment. Only your healthcare provider can provide that. The American Heart Association recommends that you consult your healthcare provider regarding your personal health matters. If you think you are having a heart attack, stroke or another emergency, please call 911 immediately.

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Beyond Going Red: Women in Cardiovascular Medicine at #AHA19

AHA19 was a tremendous meeting for many reasons – extraordinary science, inspirational attendees, performances from the cast of Hamilton, and all in my current home of Philadelphia! Sessions 2019 was also unique for its deliberate approach to the inclusion of women in cardiovascular and neurovascular medicine. I was impressed by the breadth and depth of programming related to women and the open discussions of issues facing women in medicine. If you missed this thread of Sessions 2019, here are some highlights:

presidential address

1) President Harrington’s Presidential Address: In AHA President Robert Harrington’s Presidential Address, he noted that over the last 7 years as a department and health system leader, he has become increasingly concerned with the lack of diversity in cardiovascular medicine. He also proclaimed that the male : female ratio in cardiovascular medicine is “out of whack” – a sentiment that drew rounds of applause from the audience.  He shared some startling demographic data regarding the cardiovascular workforce, including the fact that 12 states have fewer than 10 practicing women cardiologists. The AHA’s newly formed Go Red for Women in Science and Medicine Committee is tackling implicit and explicit gender biases in all of its science activities, including grant submission and peer review processes. Dr. Harrington closed this part of his speech by emphasizing the imperative upon men in power to recognize and address these disparities in cardiovascular medicine. Despite lasting less than 5 minutes, this segment of his Address was captivating, and his impassioned case for diversity and inclusion drew multiple ovations from the audience.

 

manel

2) No Manels: Dr. Harrington also announced that at AHA19 there were no all-male speaking panels, or “manels”! Earlier this year, the Director of the National Institutes of Health, Dr. Francis Collins, announced that he would no longer participate in manels or other events in which “inclusiveness is not evident in the agenda.” In his statement, he challenged other scientific leaders to do the same. When Dr. Harrington announced that he, Dr. Donald Lloyd-Jones, Dr. Manesh Patel, and AHA leadership had eliminated the manel at AHA19, I felt proud to be a part of an organization that prioritized this commitment to inclusivity in the scientific program and in a public way. The AHA has now set the standard for gender representation at cardiovascular conferences, and I am looking forward to where we go from here.

 

women at aha19

3) Women Across the Program: When I searched the word “women” in the AHA19 Sessions App, I found a total of 173 abstracts, oral presentations, luncheons, dinners, and Lounge sessions spanning career development, basic, translational, clinical, implementation, and population science. Not only were women leading at the podiums and panels, but there was an explosion of featured research in women’s cardiovascular health, cardio-obstetrics, sex differences in pathophysiology, diagnostics, therapeutics, and outcomes across the spectrum of cardiovascular disease.  In addition, the Women in Science and Medicine Lounge hosted high-yield career development programming for women throughout the weekend with sessions on mentorship, sponsorship, volunteerism, social media, negotiations, storytelling, mindfulness, and more. In the AHA Fellow in Training (FIT) and Early Career Lounge, we held a fantastic session on self-advocacy as a woman in medicine with insights from Drs. Harriette Van Spall, Biykem Bozkurt, Mary Cushman, and Monika Sanghavi. In his Address, Dr. Harrington also announced a new AHA partnership called Research Goes Red, a technology platform powered by Verily and Project Baseline to engage 1,000,000 women to contribute their health data toward research into heart and brain health, with a focus on millennial women from underrepresented ethnic and racial groups.

In my advocacy work, I have learned that women are usually successful at engaging and empowering other women to support the mission of diversity and inclusion in cardiovascular medicine, but it is often easy for other populations to remain at a distance, divorced from and uninvested in these efforts. In many ways, AHA19 brought this dialogue to the center stage and demonstrated to our trainees and early career members that we are indeed making strides toward an equitable and just future for women in cardiovascular medicine.

 

 

The views, opinions and positions expressed within this blog are those of the author(s) alone and do not represent those of the American Heart Association. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them. The Early Career Voice blog is not intended to provide medical advice or treatment. Only your healthcare provider can provide that. The American Heart Association recommends that you consult your healthcare provider regarding your personal health matters. If you think you are having a heart attack, stroke or another emergency, please call 911 immediately.

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AHA FITs at Scientific Sessions 2019

It is hard to believe that a year has passed between my first blog for the Early Career Voice and now! That first blog was a dispatch from Sessions 2018 and covered the redesign of the Sessions programming for fellows-in-training (FIT) and early career (EC) members. Because of the success of last year’s iteration, the AHA FIT Steering Committee entrusted the FIT Planning Subcommittee with creating a bigger and better FIT/EC experience at Sessions 2019. After the first day of AHA 2019, I think we are on our way to fulfilling that charge.

Since last year, a few hundred additional FIT have joined the AHA FIT program and have benefited from the range of opportunities provided through AHA committees and councils. The FIT Planning Subcommittee also launched a quarterly membership newsletter that showcases our progress and initiatives over the past year.

Our goal for this year’s Sessions 2019 programming was to create a dynamic, diverse, and inclusive slate of sessions that incorporates the breadth of cardiovascular and neurovascular medicine and science. New this year are sessions in vascular neurology, pediatric cardiology, wellness and burnout, innovation and technology, cardiac critical care, cardiac electrophysiology, and the fellow-to-faculty transition. Even though we were gifted with a Lounge twice the size of last year’s, we aimed to maintain an intimate and casual atmosphere that would facilitate one-on-one interactions between FIT/ECs and our faculty.

Once again, the first day of programming exceeded our expectations. Saturday started with a session on careers in vascular neurology with Drs. Ashutosh Jadhav, Louise D. McCullough, and Brett Cucchiara. Drs, Mohamed B. Elshazly, Akl Fahed, Annabelle Volgman, and Seth Shay Martin joined us for an eye-opening session on exploring the intersections of entrepreneurship and clinical care. We revived one of last year’s favorite sessions – Matching into Cardiology Fellowship: The Inside Scoop from Program Directors & AHA FITs – with Drs. Omar Siddiqi, Pamela Mason, Eric Yang, and Julia Indik and heard from medical students, residents, and international medical graduates interested in careers in cardiovascular medicine. A highlight of the day was AHA President Dr. Robert Harrington’s visit to the FIT/EC Lounge in which he shared a preview of his Sunday presidential address and spoke about the importance of early career members to the AHA. Next, Drs. Erin Michos and Laxmi Mehta shared their personal and crowdsourced strategies for maintaining balance and wellness during training and practice. We focused our women in cardiology session around the issue of personal advocacy this year, and Drs. Harriette Van Spall, Biykem Bozkurt, Mary Cushman, and Monika Sanghavi gave powerful testimonies about their own experiences in self-advocacy both within and outside the workplace. We concluded the day with a high-yield session on developing careers in pediatric cardiology with Drs.  Kiona Allen, Bradley Marino, Joseph Rossano, Shelley Miyamoto, and Antonio Cabrera. FIT/EC Lounge programming continues into Sunday and Monday with 11 more hours of programming designed by FIT/ECs for FIT/ECs.

If you were unable to attend Sessions 2019, keep an eye out for our Sessions recap in our upcoming December 2019 AHA FIT Newsletter and follow the hashtags #AHAFIT and #AHAEarlyCareerBlogger on Twitter!

 

The views, opinions and positions expressed within this blog are those of the author(s) alone and do not represent those of the American Heart Association. The accuracy, completeness and validity of any statements made within this article are not guaranteed. We accept no liability for any errors, omissions or representations. The copyright of this content belongs to the author and any liability with regards to infringement of intellectual property rights remains with them. The Early Career Voice blog is not intended to provide medical advice or treatment. Only your healthcare provider can provide that. The American Heart Association recommends that you consult your healthcare provider regarding your personal health matters. If you think you are having a heart attack, stroke or another emergency, please call 911 immediately.

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Learning to Lead in New Ways

Last November, I attended Career Advancement and Leadership Skills for Women in Healthcare, an illuminating conference that changed my approaches to my personal and professional development.

Led by Drs. Julie Silver and Saurabha Bhatnagar, this Harvard Medical School women’s leadership course delivers evidence-based strategies, skills development, and education to help women across health professions assume and succeed in leadership positions. Executive leaders from my institution have written about the critical need for health systems to support emerging physician leaders and to nurture them at each stage of professional advancement. Considering these organizational priorities, I thought that this course would effectively combine education with skills development in a unique environment and would provide strategic and cultural alignment with my own interests in leadership.

The course itself spanned two and a half days with a mix of daily morning plenary sessions, afternoon small group breakout sessions, and evening networking opportunities. From the outset, the tone of the conference was unlike that of any I had previously attended. There was a sense of genuine camaraderie in the rooms, despite the huge number of attendees largely from different clinical, research, and administrative backgrounds. Interpersonal interactions were built on a mutual understanding of the obstacles of underrepresentation and inequity. I noticed how openly women discussed successes and failures, asked questions, and negotiated when surrounded by a supportive group with shared experiences. As one of the few trainees in attendance, I felt especially empowered through hearing about the career trajectories of these successful women leaders.

The first day of the conference focused on identifying your mission and vision, recognizing your leadership potential and style, and learning strategic planning. Here are five of my top takeaways from day 1:

5 takeaways from day 1

The second day focused on refining your oral and written communication skills. Here are five of my top takeaways from day 2:

key takeaways from day 2

In the last session of the conference, Dr. Silver delivered an impassioned call to action for us to take our newly developed skills back to our institutions to share with others and to advance our own careers. After I returned home, I created my own customized plan for career development using the course principles. I also led an abbreviated career advancement and leadership skills workshop for my institution’s Women in Cardiology group, sharing the highlights of what I had learned with my resident, fellow, and faculty colleagues.

For more content from the conference, check out the #SheLeadsHealthcare hashtag on Twitter and this year’s conference project, the #BeEthical campaign.

This year’s course is scheduled for November 14-16, 2019 in Boston, Massachusetts. If you work in health care and are interested in developing your leadership skills, I strongly recommend investing in your personal and professional development through a course like this or another similar experience.

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What You Can Do About the Physician Shortage

government buildingIf you are like most medical residents and fellows, you probably do not regularly reflect on the federal government’s role in your graduate medical education (GME). In deciding where to study and train, you may have considered factors like class size, availability of specialty services, and diversity of training environments – but you may not have been aware of the complex influence of the law, federal insurance programs, and payment rates on your medical education. Now, active federal legislation is reinvigorating the conversation regarding GME, the impending physician shortage, our rapidly aging population, and equitable access to health care for all Americans.

The Balanced Budget Act of 1997 enacted sweeping legislation to reduce federal spending, and it did so largely with adjustments to Medicare payments. Part of this was accomplished by imposing caps on the number of residents for which teaching hospitals were eligible to receive GME funding. Medicare is the largest single program that supports GME and primarily does so through Medicare Part A, which also pays for inpatient hospital services, skilled nursing facility, home health, and hospice care. At a basic level, Medicare funds GME through two avenues: direct GME (DGME) and indirect medical education (IME) payments.

moneyDGME payments cover some of the direct costs of training residents and fellows: stipends, benefits, programming, education expenses, and overhead. IME payments are a bit more complex, so suffice it to say that these payments are intended to pay teaching hospitals’ increased patient costs linked to treating more complex patients. In fiscal year 2016, DGME funds paid to teaching hospitals totaled $3.79 billion, but an estimated total $18.5 billion in direct training costs were incurred. Some, but not all, states supplement funding support with Medicaid, so teaching hospitals are forced to find other avenues to offset these costs.1

The AAMC projects that by 2032, the United States will have a shortage of between 21,100 and 55,200 primary care physicians and between 24,800 and 65,800 surgeons and other specialists. Research from the American Association for Thoracic Surgery estimated that at current rates of growth and transition, by 2035, cardiothoracic surgeons will have to increase their workload by 121% to meet demands.2 At the same time, by 2032, the number of Americans above age 65, the age group with the largest per capita consumption of health care, will grow by nearly 50%.3 An estimated one-third of the current physician workforce is older than 55 years and is projected to retire within this time frame. Teaching hospitals are already supporting over 12,000 residency positions which are not funded by Medicare.4 In 2002, the Association of American Medical Colleges (AAMC) sought to mitigate the impacts of his physician shortage and aging of the population by calling for a 30% increase in medical school enrollment. Since then, with expanded class sizes and the establishment of 26 new medical schools, the AAMC met its goal and the number of medical school matriculants has grown by more than 31%.5 However, without the commensurate increase in postgraduate training positions, this growth in medical school matriculants alone cannot alleviate these crises. Finally, given that fully training a physician can take anywhere between 3 to 11 years, the time to act is now.

woman doctorman doctorEarlier this year, bipartisan members of both the United States House of Representatives and Senate introduced a bill called the Resident Physician Shortage Reduction Act of 2019 (H.R. 1763/S. 348) which aims to increase the number of Medicare-funded residency positions by 15,000 above the current cap – 3,000 positions each fiscal year from 2021 through 2025. The bill includes provisions to prioritize hospitals that train residents in primary care and in general surgery and programs that emphasize partnerships with Veterans Affairs medical centers and rural and/or community-based settings. This is a major first step toward enabling the physician workforce to meet the demands of an already strained American health care system. Ultimately, without this boost in the physician pipeline, the vulnerable and under-resourced patients will suffer most.

There are other non-GME programs that also need our support to ensure a diverse, inclusive, and geographically representative workforce. These include the National Health Service Corps, the State Conrad 30 J-1 Visa Waiver program, and Title VII/VIII training programs, all of which you can learn more about through the AAMC website.

advocacyLast month, over 65 medical associations and specialty societies sent a joint letter to the members of the U.S. Congress strongly encouraging them to cosponsor the Resident Physician Shortage Reduction Act of 2019, and you can do the same! A quick email or phone call as a voting constituent can go a long way; you can start by finding your representatives here. If you are interested in learning more about advocacy in cardiovascular medicine, start by reading my co-Early Career Blogger Christa Trexler’s January blog here and the AHA’s advocacy resource website here.

 

References

  1. https://aamc-black.global.ssl.fastly.net/production/media/filer_public/98/7b/987b00be-2ca9-4466-89cd-0892d233f63d/gme_training_tomorrows_physician_workforce.pdf
  2. https://www.sts.org/sites/default/files/documents/GME-One-Pager.pdf
  3. https://aamc-black.global.ssl.fastly.net/production/media/filer_public/98/7b/987b00be-2ca9-4466-89cd-0892d233f63d/gme_training_tomorrows_physician_workforce.pdf
  4. https://news.aamc.org/for-the-media/article/gme-funding-doctor-shortage/
  5. https://news.aamc.org/press-releases/article/applicant-data-2018/
  6. US Capitol by shashank singh from the Noun Project
  7. Book by Kiran from the Noun Project
  8. Money by Andreas Vögele from the Noun Project
  9. Doctor by Iconic from the Noun Project
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Bigger Isn’t Always Better: My 3 Tips on Maximizing the Small Conference Experience

In my March blog, I wrote about a few of my tips to get involved in our cardiovascular professional societies. I received a lot of great questions and feedback from trainees across the spectrum of cardiovascular disease through Twitter, LinkedIn, and email, so I thought I would share some similar content this month.

As busy cardiology fellows in training (FIT), finding the free time to attend more than one professional conference in an academic year is tough. Trying to choose among the various local, regional, national, and international opportunities can be difficult, not to mention the financial and time commitments required to attend multiple meetings in a year. As I have become a more senior cardiology FIT, I have come to appreciate the value of attending smaller, disease or topic-specific conferences. Here are 3 of my tips to make the most of these opportunities.

MindTheGraph.com

1) Search the CME offerings of academic institutions around you: Most large academic medical centers host continuing medical education (CME) programs focused on specific topics or diseases throughout the year. They are often held on weekends but are usually less time-intensive than the national professional society meetings. Despite their smaller sizes, the organizers will still invite preeminent clinicians and scholars in the relevant fields, which make these meetings terrific opportunities for FITs to access thought leaders and craft collaborations. I recently attended a weekend-long CME course focused on hypertrophic cardiomyopathy at an academic institution in a neighboring state. At the conference, I reconnected with a long-distance mentor who was invited to give a lecture, met a junior faculty member and brainstormed cross-institutional collaborations, and learned about HCM from internationally renowned clinicians and scientists. In addition, taking a deep dive into a topic of your interest can be a welcome respite from the hectic cognitive shifting we are forced to do at larger conferences.

MindTheGraph.com

2) Find a way to participate: While smaller conferences usually do not have much room for flexibility in the programming, the organizers may allow FITs to present cases to accompany the didactics. Offer to present a case that ties into the talk of a speaker whom you are most interested in meeting. By doing so, you can “break the ice” with your case presentation and worry less about initiating interaction with the speaker. You may also have the course registration fee, if there is one for FITs, waived through participating. Along the way, stay responsive over email and telephone and obey the organizer’s deadlines for submission of your materials. If you notice that the conference does not have an avenue for FIT involvement, offer to contribute by presenting a case or submitting a poster. Last year, I advised one of my mentees to contact the organizers of a sports cardiology course she was interested in attending. Even though there were no publicized opportunities for FIT engagement, she let the organizers know about her interest in attending and enthusiasm to contribute. The organizers invited her to the course and extended discounted registration. This year, she is on the course planning committee and is spearheading the FIT case and poster presentation sessions!

MindTheGraph.com

3) Follow up after the course: Send an email to the course directors and your new contacts after the course. Let them know how much you enjoyed the experience and that you would be delighted to participate in the same or a similar conference again. Close the loop with new contacts and propose next steps to move those potential collaborations forward. Connect with each other through social media, as well.

 

What are your tips for maximizing the small conference experience? I would love to hear them over the next month – share them with other #AHAFIT and me on Twitter and LinkedIn!

 

 

 

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My Three Tips for “Getting Involved”

While we are still incorporating the knowledge from AHA Scientific Sessions 2018’s late breaking trials like REDUCE-IT and TRED-HF into our daily practices, the AHA has already started planning for Scientific Sessions 2019 being held in my current home of Philadelphia, Pennsylvania. My co-AHA Early Career Blogger, Jeff Hsu, M.D., Ph.D., and I are excited to serve as Co-Vice Chairs for the AHA’s Fellow in Training (FIT) Programming Committee, and we are hard at work incorporating feedback from AHA18 into our vision for AHA19. For a recap of the AHA18 FIT/Early Career Lounge experience, check out my November blog here and FIT Insight blogger Anum Saeed, M.D.’s January blog here.

Becoming involved in my professional societies as a trainee has been hugely rewarding for me, but admittedly, making those first breakthroughs was not easy and took a few years to accomplish. In this blog, I will share 3 of my tips that can help you seize these opportunities.

1) Seek out a well-connected sponsor: Our professional societies are very eager to involve more FITs and Early Career members in a majority of their initiatives. Often, they advertise and require an application for trainee-specific opportunities like blogging, editorial, and leadership council positions. But, there are a host of positions that are not filled via an application-based process and are frequently offered to trainees through a personal connection within the society. If you have applied to formal engagement opportunities and your application has not been selected, instead of being discouraged, seek out a well-connected sponsor within the society with whom to share your motivation. Faculty usually know of other available opportunities for trainee involvement within their own councils or committees and can connect you with other members volunteering in clinical and research areas of your interest.

 

2) Offer concrete ideas when you make contact: When you connect with a society member whether in person, via telephone, or via email, instead of just saying that you would like to “be involved,” offer a few concrete ideas for the society and its mission. By doing this, you can demonstrate your enthusiasm and establish your dedication to the potential role. Your new sponsor will be more likely to engage with you and find an opportunity for you that is aligned with your interests and skills.

 

3) Form relationships with trainee colleagues who are already involved: When societies have formal councils or committees comprised of trainees, they often rely on them to disseminate news and opportunities nationally and internationally. While tip #1 can definitely help to launch your involvement, following the same practice with your FIT and Early Career colleagues can sometimes be more impactful. Trainees’ professional networks are usually smaller than those of the faculty in society leadership positions, so when we are asked to submit names of colleagues for opportunities, our selection pools are more limited. In the AHA18 FIT/Early Career Lounge, I met multiple medical students, residents, and fellows who expressed interest in the AHA FIT program and shared their feedback with me after Sessions. In turn, when I was offered the chance to nominate FITs and Early Career members for other roles, these new colleagues were at the top of my list.

 

If you are a FIT or Early Career member, watch out for emails about AHA Scientific Sessions 2019 programming in the coming months. If you have a great idea about what you would like to see at AHA19, reach out to Jeff (@JeffHsuMD) and me (@noshreza) on Twitter!

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What Can You Do When 15 Minutes Isn’t Enough?

In the last year of my fellowship continuity clinic, my “new patient” visits were allotted 30 minutes and my “return” patients were scheduled for 15 minutes. Despite having more flexibility than my attendings, it never seemed like I was able to offer all of the critical thinking, counseling, and education to which I aspired. The myriad constraints of electronic documentation, overbooking, and care fragmentation ultimately result in limited face-to-face time between patients and their physicians. I realized that, regardless of their health literacy, patients are forced to seek health information from other sources – whether these sources were friends and family, traditional media, or social media platforms.

When I began my training in our specialized inherited cardiomyopathy clinic, I learned about a number of support resources for patients and by patients with these complex disorders. These resources fulfill many of our patients’ needs, ones that our current system does not give physicians the time and space to acknowledge. Here, I will use the example of hypertrophic cardiomyopathy (HCM) to illustrate a few benefits of understanding this landscape – for us and for our patients.

The Patient Experience

In our specialized clinic embedded in a large academic medical center, many of the individuals we see are referred from outside of our health system. We spend a significant amount of “pajama time” wading through the mass of progress notes, procedure reports, and imaging data to ensure our consultations incorporate all of the available and pertinent information.1 In doing this with such frequency in this setting or in any other specialized clinic, we can become desensitized to the patient’s experience of wading through the masses.

This month, Cynthia Burstein Waldman, the creator/founder of HCMBeat, posted a blog about her 12-year post-myectomy follow-up at Mayo Clinic. Ms. Waldman was diagnosed with HCM almost 20 years ago and has since started a website to assist others living with HCM. In her blog about this visit, she details her pre-visit preparations, skills in navigating patient portals, issues with phlebotomy after being instructed to fast for 12 hours, cardiovascular testing, clinic experience, and post-visit communication. Reading her account and interpretation of this encounter was incredibly enlightening for me, especially because it allowed me to appreciate the aspects of a “follow-up visit” that patients might genuinely value and consider essential to a good experience. Patient-authored blogs like this one and the AHA’s Support Network on Cardiomyopathy can help contextualize the patient experience for us in ways that cannot be accomplished solely through periodic clinic visits.

 

Education

One of the core values of the Hypertrophic Cardiomyopathy Association, the largest U.S. organization serving individuals with HCM, is to provide “education to patients, families, the medical community and the public about HCM.” Within this core value, the HCMA provides education about HCM symptoms and treatment, raises awareness about malignant arrhythmias and sudden cardiac death in HCM, and promotes HCM research. Similar to HCMBeat, HCMA was founded by another woman affected by HCM, Lisa Salberg. The website’s Resources section is very well curated with information on HCM itself, finding an HCM center, links to academic journal articles about HCM, and it also has a multimedia collection with webinars and podcasts related to these topics. While intended to be primarily patient-facing, the website also serves as a valuable educational resource for clinicians. In our current age of medical mistrust and ever-present threats of medical misinformation, resources like this one represent one approach for patients and for clinicians to close the literacy gap.

 

Advocacy

In January, Christa Trexler, PhD wrote a great AHA Early Career blog about the importance of advocacy in cardiovascular medicine and research. Staying abreast of the active legislation and political conversations regarding health care can be daunting for clinicians, especially those without health policy experience, but the above mentioned websites also have dedicated sections on advocacy, state and federal legislation pertaining to HCM, and on navigating the U.S. healthcare system. These toolkits are a great place to start for clinicians interested in taking a more active role in educating our legislators and promoting change in our communities.

 

Do you know of similar patient support resources in your field? If not, I encourage you to start by checking out the AHA’s Support Network and engaging with patients and caregivers of cardiovascular disease and stroke.

 

References

  1. Sinsky C, Colligan L, Li L, et al. Allocation of Physician Time in Ambulatory Practice: A Time and Motion Study in 4 Specialties. Ann Intern Med. 2016;165(11):753-760.

 

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It’s All In The Family

Our understanding of the genetic basis of adult-onset cardiomyopathy is rapidly evolving. Most of us learned to practice medicine in a paradigm that relied on detailed disease phenotyping, but now we have the ability to incorporate genetic and genomic information into routine clinical care. Even if you cannot remember the last time you thought about genes or pedigrees, here are a few modifications you can make to your practice today that will help you keep up with this exploding field of cardiovascular medicine.

 

1) Take a minimum three-generation family history in all patients with a primary cardiomyopathy.

  • The goals of taking a family history are to learn (1) whether the cardiomyopathy is familial, (2) about disease characteristics among family members, (3) if it is inherited in a specific pattern, and (4) to identify at-risk relatives.
  • Most adult-onset cardiomyopathies are inherited in an autosomal dominant pattern, but other inheritance patterns (e.g. dignetic, multigenic) are possible and need further study.
  • Importantly, an individual can have a genetic form of cardiovascular disease without having affected relatives. Most often, this is due to recessive inheritance, de novo mutations/variants, or reduced penetrance.

 

2) Use focused questions to obtain the family history.

  • The use of vague terms like “heart attack” can lead clinicians away from pursuing an inherited etiology of disease and prevent them detecting other important cardiovascular diagnoses like sudden cardiac death in family members.
  • Ask specific questions regarding heart failure symptoms (e.g. presence or absence of dyspnea at rest or on exertion, paroxysmal nocturnal dyspnea), arrhythmia symptoms (e.g. palpitations, presyncope, syncope with or without exertion), and sudden death (e.g. drowning, single-vehicle accidents) in family members.
  • Knowing about relatives’ cardiovascular procedures like arrhythmia ablation, cardiac surgery, device implantations, or heart transplantation can also be helpful.
  • If a multisystem syndrome like a laminopathy or Fabry disease is suspected, familiarize yourself with the extracardiac manifestations and include pertinent questions in your history.

 

3) Remember that diagnosing an individual with an inherited cardiovascular disease is just the first step in the process.

  • In cardiovascular genetics, a key concept is the transition of practice from individual patient-based care to family-based care. By incorporating the information you generate from your comprehensive multi-generational family history, you also gain insight into disease penetrance, expression, age of onset, and pleiotropy.
  • Generally, cardiomyopathies are considered “medically actionable” because evidence-based treatments to reduce morbidity and mortality exist.
  • Beyond just having effects on medical and device therapies, following this paradigm of family-based care also has implications for reproductive and family planning and lifestyle practices.

 

If you are interested in learning more about this topic, check out the 2018 update to the Heart Failure Society of America Practice Guideline on the Genetic Evaluation of Cardiomyopathy (PMID: 29567486).

 

 

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The Unexpected Benefits of Extending Your Training

During my general cardiology fellowship, I developed a special interest in the care of patients with inherited cardiovascular disease. By virtue of the robust clinical activity of my division’s advanced heart failure and electrophysiology programs, I was exposed to clinical dilemmas like risk stratification in hypertrophic cardiomyopathy, primary prevention of sudden cardiac death in lamin A/C cardiomyopathy, and timing of heart transplantation for Danon disease early in my training. Refreshing my knowledge of clinical genetics alone was overwhelming, and I realized that while the rapid growth in genomic technologies was transforming our understanding of inherited cardiovascular disease, frontline clinicians were lagging behind in applying this knowledge to disease prevention and clinical care. To cultivate my interests further and learn to bridge this gap, I joined my institution’s new National Human Genome Research Institute (NHGRI)-supported postdoctoral training program in genomic medicine, a program created to prepare the next generation of physicians and scientists to implement genomic approaches to improve healthcare.

For M.D./D.O. trainees who have spent six consecutive years entrenched in clinical residency and fellowship programs, the idea of extending training by two years, re-entering the world of formal coursework and letter grades, and learning new skills to perform complex and unfamiliar research is more than enough to deter one from pursuing this career development track. However, participating in this program has afforded me many unexpected benefits outside the bounds of my clinical and research training:

  • Caring for patients with a new type of multidisciplinary team:
    • During my clinical training, my idea of a multidisciplinary care team was mostly grounded in my inpatient experience. While cooperating toward the same goal, physicians, nurses, advanced practice providers, therapists, nutritionists, pharmacists, social and case management workers often performed their roles asynchronously with little collaboration outside of the prescribed morning rounds. In contrast, my experience in our inherited cardiovascular disease clinic introduced me to a new paradigm essential to caring for patients and families with genetic disorders. I have been fortunate to learn about variant adjudication, pre-test and post-test counseling, cascade screening, and much more from our tremendous genetic counselors who are integral in the outpatient evaluations of our probands.
    • Though the initial years of my practice have been focused in adult medicine, I have learned about the importance of tracking variant segregation in families and of comprehensive transitions of care through our joint familial cardiomyopathy and arrhythmia programs, partnerships with our neighboring pediatric hospital.
    • Finally, I have witnessed the potential of real time bedside-to-bench-to-bedside research collaborations as shown by my mentors in their recent report of a clinical incorporation of rapid functional annotation of cardiomyopathy gene variants.1
  • Developing and sharing expertise:
    • In leading my fellowship’s didactic education curriculum as Chief Fellow, I took advantage of opportunities to share my new knowledge and skills with other fellows and residents. For our “fresh case” presentations, I often chose to present perplexing cases of cardiomyopathy to reinforce teaching points regarding the workup of genetic cardiomyopathies and the importance of taking a minimum three-generation family history.
    • After completing the Examination of Special Competence in Adult Echocardiography, I led a fellow teaching conference on echocardiography in hypertrophic cardiomyopathy. I also joined our internal medicine residents for a clinicopathologic conference as an expert discussant, a position usually reserved for faculty but generously offered to me given my interest in cardiovascular genetics and enthusiasm for teaching.
    • Pursuing these opportunities to develop and share my expertise has helped me solidify my own knowledge in the field, develop my oral and written communication skills, and grow as a peer mentor.
  • Meeting physicians and scientists outside of cardiovascular medicine:
    • The world often feels quite small while training within a medical specialty, but through my postdoctoral program, I have been exposed to physicians, scientists, and trainees in many disciplines outside of cardiovascular medicine. I heard diverse perspectives in my bioinformatics, biostatistics, and bioethics courses that have encouraged me develop my own independent opinions about my fields of interest. Multidisciplinary forums like genetics journal clubs, genetic rounds, and campus retreats have helped me contextualize the practice of genomic medicine.

 

 

My time in the postdoctoral program has shown me that these unexpected benefits of training are highly valuable to a trainee’s success. Through the genomic medicine postdoctoral program, the NHGRI “hopes to bring cross-training opportunities to individuals at different career levels and to support the training of investigators working in both basic genome science and genomic medicine” as it recognizes that this “is essential to realizing the full potential of genomics.”2

 

References:

  1. Lv W, Qiao L, Petrenko N, Li W, Owens AT, McDermott-Roe C, Musunuru K. Functional Annotation of TNNT2 Variants of Uncertain Significance With Genome-Edited Cardiomyocytes. Circulation. 2018;138(24):2852-2854.
  2. Green, Eric D. “NHGRI’s Research Training and Career Development: Genome Science to Genomic Medicine.” National Human Genome Research Institute. 3 Sept. 2014. https://www.genome.gov/27557674/may-5-nhgris-research-training-and-career-development-genome-science-to-genomic-medicine/