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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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Participating in Science Outreach is a Win-Win For Everyone

Last month I wrote about the January is for Advocacy AHA initiative and discussed the importance of physicians and scientists getting involved in science advocacy. Since I mentioned I wanted this New Year’s resolution to stick, I am continuing this theme for February because there are so many different ways to get involved with our communities and advocate for change.

One way I personally enjoy engaging with my community is by participating in science outreach activities. Now, the best part about this type of extra-curricular community engagement is that it comes in a variety of different forms, whether it be judging a local science fair, visiting an elementary classroom to talk about your science and do an experiment (my favorite is isolating DNA from strawberries with them), or even Skyping with a classroom of students through the fantastic Skype A Scientist program (you don’t even have to leave work!).

Before I highlight a fantastic cardiology outreach program that just recently happened, I want to take a moment to discuss why science outreach programs are so critical for our both our local and scientific communities. We are all busy, so finding time to fit something like this into our schedules feels like a scary game of Tetris. However, science and particularly the cardiology field, has diversity/inclusivity issues that need attention. Even though this is an issue that some may feel like has “been addressed,” women still make up around only a third of scientific researchers across the world. While this varies across disciplines, only around 13% of cardiologists are women – even though roughly 50% of medical students are women. All of these numbers are even lower for people of color.

While I understand that these issues are insanely complex and speak to the need of a re-vamp of how our scientific and medical institutions are structured, we need to continue to flame the excitement for science in students of every background, gender and race. The easiest way to do this is by getting involved and not just in your neighborhood, but also underserved communities. I highlighted a variety of ways to get involved in science outreach in last month’s post. The STEM ecosystem is a particularly good resource for getting in contact with underserved communities you may have not been aware of before.

I mentioned before that I completely understand that getting involved or organizing a science outreach event feels overwhelming. However, working with other colleagues within your network who are also passionate about this issue is the key to really making an impact. Just like with everything else in science, you don’t have to do this alone!

This is exactly the approach Dr. Kathryn Berlacher and Diana Rodgers took to organize their recent She Looks Like A Cardiologist event last month in Pittsburgh. Both women took their passion for increasing the diversity in cardiology into creating a fantastic event where 28 female high school students interested in becoming cardiologists got to meet with local women in cardiology. The day was filled with a mix of lectures, group discussions and some simulation, as well as one-on-one lunch with paired mentors. The best part of this event is that it’s not over – the organizers didn’t want this to be a “one and done” day, so every girl got paired with one of the mentors who will help answer college application questions, advise on jobs and summer experiences, and just be a resource for them in the future. You can find a great breakdown of the day on Dr. Berlacher’s twitter page (@KBerlacher). Seeing this event on Twitter is actually what inspired me to write this blog post and I emailed Dr. Berlacher right away to talk about it. I asked her if she thinks outreach activities are valued within our field and I loved her response:

Definitely – many of my colleagues do it and love it. Almost all of my fellows do it. The fellows who came on Saturday raved about the event afterwards, saying they thought it was going to be a great event for the high school girls, but at the end of the day they felt inspired and invigorated too.  Things like this (and all our other volunteering), keeps us grounded and really provides perspective. I honestly think it’s a great way to bond – AND to combat burnout in the field, which is another hot topic. If you feel valued and feel that what you’re doing is making a difference, then you’re much less likely to get burnt out at your job.”

I hope this event inspires you to get involved in science outreach within your community as much as it inspired me. Here’s to seeing many more events like this in the future.

 

 

 

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Why Advocacy is Critical for the Future of Cardiovascular Research & Medicine

As researchers and physicians, many of us got in to our professions to push the scientific enterprise further to ultimately help others. We’ve all trained for an insane amount of years and collectively we work as a unit to uncover the intricacies of the cardiovascular system, develop therapeutics and treat patients. We traditionally think of ourselves as researchers or physicians first, but obviously we are all so much more than our jobs. We are also citizens within a really complex system that has been continually struggling to serve all of its citizens equally. It’s no secret that access to affordable health care is currently not equitable within our society. Similarly, there are also large diversity & inclusivity issues within our training institutions for both researchers and physicians.

However, something we don’t think about enough is that our intensive training and experience within these systems has also prepared us to be effective advocates for these issues. We have the opportunity to promote tangible change and some might argue it’s even our responsibility.

One of the things I really appreciate about being apart of the American Heart Association (AHA) is that this is something the organization doesn’t shy away from. During his presidential address at AHA Scientific Sessions 2018, Dr. Ivor Benjamin gave a heartfelt and determined talk about what the future of the AHA’s advocacy mission looks like. He discussed how supporting local and federal advocacy, early careers and mentoring is key to supporting the future of the AHA – but only 3% of cardiac professionals are African American men and this is something the AHA wants to help change. To help solve the diversity and inclusivity issues within the cardiac field, the AHA is expanding major undergraduate initiatives to fix the leaky pipeline. My favorite part of Dr. Benjamin’s talk was when he urged everyone at AHA18 to get involved in advocacy, not just for our field, but also for our communities. Because this is the key point: in order for our work to have meaning and to be effective, we need to ensure our communities are healthy. We also need to put value to advocacy efforts in our field – this is an essential part of our profession.

Well, this is all great, but how can you get involved? We are all insanely busy; I know adding advocacy efforts can seem daunting. Luckily for all of us, one of the focuses of the AHA for January is Advocacy. Since over 7 million Americans with cardiovascular disease are currently uninsured, advocating for the protection of the Affordable Care Act is something we can all do from our computers right now.

How can you help? (Provided by the AHA newsroom)

https://www.heart.org/en/get-involved/advocate/state-issues

 

Looking for more ways to help on other issues?

  • The AHA has a great advocacy resource page for to get involved with efforts at the federal, state and community levels with issues regarding health care, tobacco prevention, and healthy lifestyles for kids.
  • Sign up here to become part of the AHA’s grassroots network, You’re the Cure, which is focused on advocating for heart-healthy and stroke-smart communities.
  • There are many great non-profits around the country focused on promoting science funding, literacy, inclusion, diversity & advocacy – finding the right one for you is key and many of them have already done the legwork by developing toolkits for you to get started in your community.
  • Interested in STEM outreach as a way to get involved in your community? The great Marian Wright Edelman said, “You can’t be what you can’t see.” Participating in local educational initiatives is one of the best ways to expose kids to what scientists and physicians actually look like (in addition to getting them excited about science). The STEM Ecosystem is a great way to get started; there are local chapters all over the country.

I recently watched the brilliant documentary (I highly recommend it!) about Mr. Rogers, “Won’t You Be My Neighbor”, where I was reminded of his advice many of us take comfort in during intense times.

“When I was a boy and I would see scary things in the news, my mother would say to me, “Look for the helpers. You will always find people who are helping.” – Mr. Rogers

We are the helpers. Its time we use our power to advocate for equity within our field and communities.