Member Insights: eNews 2018 Highlights
This special eNews issue showcases member-authored Diversity Corner and Special Feature articles that appeared in 2018. Take a look back to appreciate the informative articles and personal reflections written by your colleagues.
Innovative Training Programs to Increase Diversity in the US Biomedical Research Workforce
Betty S. Pace, MD
The necessity for greater racial and ethnic diversity in the US biomedical research workforce is evident; however, to achieve this formidable goal, many challenges must be overcome. As a nation, we can promote scientific, innovative, and culturally sensitive health care delivery by broadening the diversity of thought that comes with a diverse biomedical research and clinical workforce. Further, underrepresented minority (URM) groups are the most rapidly growing segment of the US population and there is an urgent need to ensure that scientific talent from these groups is recognized, mentored and actively supported. For example, in 2010, Hispanics/Latinos, Black/African Americans, and American Indians/Alaskan Natives represented 30% of the US population, yet only 4.8% of National Institutes of Health (NIH) research project grants were awarded to principal investigators from these groups (1). Despite several decades of efforts to increase the proportion of individuals from under-represented groups in the biomedical workforce, the issue of under-representation remains.
Innovative training models and dedicated mentoring are paramount to addressing disparities in the ethnic and racial makeup of faculty engaged in biomedical research. The Scientific Workforce Diversity Office leads the NIH effort to diversify the US scientific workforce. Recently the NIH Common Fund established two programs including the National Research Mentoring Network (NRMN) and Build Infrastructure Leading to Diversity (BUILD) Initiative. The NRMN is a nationwide consortium of biomedical professional collaborating to provide all trainees across the biomedical, clinical and social sciences with evidence-based mentorship and professional development (https://nrmnnet.net). The NRMN seeks to expand the training pipeline and success of URM trainees. By contrast, the BUILD program consists of grants to undergraduate institutions to implement and study innovative approaches to engaging and retaining students from diverse backgrounds in biomedical research. The hope is to help them on the pathways to become future contributors to the NIH-funded research enterprise. BUILD aims to achieve change at the student, faculty and institutional levels. In 2012, ten BUILD programs across the US were funded (www.nigms.nih.gov/training/dpc/Pages/build.aspx).
There is limited data demonstrating that structured mentoring programs promote the professional development and grant funding of early-stage investigators (2). To address this critical issue, in 2006 the National Heart, Lung, and Blood Institute (NHLBI) established the Program to Increase Diversity Among Individuals Engaged in Health-Related Research (PRIDE) to achieve the objective of providing an intense research and career development mentorship. The Coordination Core at Washington University (https://pridecc.wustl.edu/) leads the program to address the difficulties experienced by junior investigators in establishing independent academic research careers. The primary outcome of PRIDE is to increase the number of URM scientists in the biomedical sciences by preparing them to compete for NIH funding for basic and clinical research related to heart, lung, blood, and sleep disorders. There are seven funded PRIDE programs across the US (3,4).
The Summer Institute hosted by Augusta University, Functional and Translational Genomics of Blood Disorders (FTG-PRIDE), established in 2006 under the leadership of Dr. Betty Pace, aims to train junior-level faculty to perform functional and translational research related to blood disorders. Mentees learn how to conduct bench and clinical research, access public databases and to perform data mining procedures. The primary activity of the FTG-PRIDE Program is mentorship, which is one of the most important activities linked to career advancement, faculty satisfaction and research funding (5). However, two significant hurdles to address related to NIH funding include the large difference in the number of NIH research program grants from URM investigators compared to Whites (6) and the relative lack of competitiveness of grant applications from URM investigators. In particular, 73% of applications from African Americans were determined by review committees to not be of sufficient scientific merit to be “fully discussed” during the initial stage of review, compared to 59% of applications from Whites (1). The primary metric of success for the PRIDE Program is the submission of at least one grant application for extramural funding within 2 years of completing training. Based on these observations and objective, the FTG-PRIDE Program places special emphasis on developing the grant-writing skills of mentees through various approaches including dedicated NHLBI Program Officers providing annual grant-writing workshops.
To assess the effectiveness of the FTG-PRIDE program, the number of federal grants awarded to mentees was confirmed using the NIH RePORTER database. Thirty-four out of 47 URM mentees recruited from 2006-2014, conducted hematology research. Of the 34 mentees, 74% submitted at least one extramural grant within 2 years following training completion, mainly NIH Mentored Career Development K-Awards and research program grants. The overall funding rate was 47% for the 47 mentees trained. The FTG-PRIDE data compares to a funding rate of 27% for K-awards for African Americans/Hispanics and 35.2% for all racial/ethnic groups combined from 2006-2012 (7). Over a 10-year period, the 34 mentees trained in the FTG-PRIDE program conducting hematology research contributed 376 peer-reviewed papers to the hematology field, further demonstrating the overall success in enhancing scholarly contributions from URM investigators.
Mentorship in academic institutions has traditionally been of the dyadic model, where a senior advisor provides ongoing advice to a single trainee. While the dyadic model continues to be the major focus of mentoring, a peer-to-peer mentorship approach addresses interests of trainees with provisional guidance by a senior faculty facilitator. Furthermore, the value of peer-mentorship networks has been well-documented (8). To address this need, we implemented a peer-mentoring component in the FTG-PRIDE program in 2015. To date, 28 mentees have completed online and exit interviews at the end of the 2-year training period. Using constant comparison analysis, specific themes and sub-themes emerged. Participants reported peer-to-peer mentoring helped to create a sense of community in which participants held each other accountable for the goals they set. Because mentees considered their peers to be at a similar career stage, they expressed a high degree of confidence in the altruistic motives underlying peer advice. The FTG-PRIDE program will continue to expand the peer-mentoring component.
While the desired outcomes of various mentoring approaches is to increase the diversity of the US biomedical research workforce, there are other benefits which will require more time to become apparent. For example, the issues of health disparities and workforce diversity are closely related. To address health disparities in hematology, we trained 13 pediatric and 4 adult hematology/oncology physicians in the FTG-PRIDE Program. The significant number of clinicians trained supports career development of early-stage hematologists conducting biomedical research. To gain a better perspective on the hematology/oncology workforce, the American Society of Pediatric Hematology/Oncology (ASPHO) Workforce Advisory Taskforce collected data using Division Directors, and Membership Compensation and Demographics surveys from 2010 to 2016 (9). This effort led to a comprehensive description of pediatric hematology oncology (PHO) physicians, professional activities, and characteristics of the workplace. In addition, data related to gender and diversity in ASPHO emerged. In 2015, women constituted about 50% of the PHO physician workforce, however there are limited data available regarding the ethnicity of physicians. Some insights were gleaned from three recent surveys indicating that among PHO physicians in the US, about 73-79% are Caucasian, 10-14% Asian/Pacific Islander, 3-8% Hispanic, and 2% African American (9). Additional data will inform effective strategies to expand the pipeline of trainees that pursue careers in the hematology/oncology field to increase the diversity of PHO physicians contributing to the US biomedical research workforce.
- National Institutes of Health Advisory Committee to the Director Working Group on Diversity in the Biomedical Research Workforce. Draft Report of the Advisory Committee to the Director Working Group on Diversity in the Biomedical Research Workforce. (June 13, 2012). Available at https://acd.od.nih.gov/documents/reports/DiversityBiomedicalResearchWorkforceReport.pdf.
- Steiner JF, Curtis P, Lanphear BP, et al. Assessing the role of influential mentors in the research development of primary care fellows. Acad Med 2004;79:865-872.
- Rice TK, Liu L, Jeffe DB, Jobe JB, Boutjdir M, Pace BS, Rao DC. Enhancing the Careers of Under-Represented Junior Faculty in Biomedical Research: The Summer Institute Program to Increase Diversity (SIPID). J Natl Med Assoc 2014;106:50-57.
- Rice TK, Jeffe DB, Boyington J, et al. Mentored training to increase diversity among faculty in the biomedical sciences: The NHLBI Summer Institute Programs to Increase Diversity (SIPID) and the Programs to Increase Diversity among Individuals Engaged in Health-related Research (PRIDE). Ethn Dis 2017;27:249-256.
- Pfund C, House SC, Asquith P, et al. Training mentors of clinical and translational research scholars: a randomized controlled trial. Acad Med 2014; 89(5): p. 774-82.
- Ginther DK, Schaffer WT, Schnell J, et al. Race, ethnicity, and NIH research awards. Science 2011;333:1015-1019.
- Pace BS, Makala LH, Sarkar R, et al. Enhancing diversity in the hematology biomedical research workforce: A mentoring program to improve the odds of career success for early stage investigators. Am J Hematol 2017 92(12):1275-1279.
- DeCastro R, Sambuco D, Ubel PA, et al. Mentor networks in academic medicine: moving beyond a dyadic conception of mentoring for junior faculty researchers. Acad Med 2013;88(4):488-96.
- Hord J, Shah M, Badawy SM. et al. and American Society of Pediatric Hematology/Oncology Workforce Advisory Taskforce. The American Society of Pediatric Hematology/Oncology workforce assessment: Part 1-Current state of the workforce. Pediatric Blood Cancer 2018;65:e26780.
Introducing the ASPHO Diversity Advisory Group
Emily Mueller, MD MSc
The Board of Trustees recently approved the formation of the Diversity Advisory Group.
We are pleased to announce that the Diversity Subcommittee of the Professional Development Committee has been approved to become the Diversity Advisory Group, a standalone entity. The decision to change to an advisory group stemmed from the appreciation that the topic and promotion of diversity relates to all aspects of ASPHO, including but not exclusive to professional development. Therefore, the intent of the Diversity Advisory Group will be to present recommendations to the ASPHO Board of Trustees regarding ways in which to promote diversity and inclusion within the Society. Similar to participation on a committee, the Diversity Advisory Group will have the same term length (up to two terms), will plan to meet quarterly, and will be expected to present reports to the ASPHO Board biannually.
ASPHO is dedicated to the inclusive participation of a diverse set of members to serve on its committees, task forces, and board, as described in the ASPHO Diversity Statement:
“ASPHO values and encourages diverse and inclusive participation within the profession of pediatric hematology/oncology. ASPHO is focused on attracting, developing, and retaining volunteers who reflect the diversity of its membership to play key roles in leading the society. The society seeks to create an atmosphere that encourages varied perspectives and participation on its committees, task forces, and board. ASPHO believes that an open exchange of ideas from diverse perspectives will result in improved decision making and will best serve our members' collective needs and interests and, by extension, those of their patients.
ASPHO therefore charges its nominating committee, committee chairs, and board to strive for balance and diversity in the elected and appointed volunteer work force. It is our collective goal to identify and nurture the future leaders of the organization and to ensure that they represent the wide diversity of career stage, ethnicity, gender, geographic location, institutional size, and race.”
Therefore, the Diversity Advisory Group will work towards advising the board on the needs and opportunities for promoting diversity, inclusion, and cultural competency within the Society. The Diversity Advisory Group also will be responsible for conducting cultural and demographic analyses of the membership and volunteer representation. They also will continue to contribute and identify other members to write Diversity Corner articles for the ASPHO eNews.
While the Diversity Advisory Group will focus on the Society’s diversity needs, the Diversity Special Interest Group will continue their excellent work in providing a national networking forum for members to promote diversity in the field of pediatric hematology/oncology at large.
Diversity Special Interest Group—ASPHO 2018 and Beyond
Jacqueline Casillas, MD MSHS, Kerice Pinkney, MD, Emily Meier, MD MSHS, and Pinki Prasad, MD MPH
Early outreach to the pipeline of potential future clinicians and researchers is critical to ensure success for increasing diversity within our workforce of pediatric hematology/oncology. A recent review on ensuring success for investigators from diverse backgrounds in academic pediatrics has highlighted that while 38% of individuals in the United States are from racial/ethnic backgrounds, our workforce within the field of pediatrics does not mirror these numbers (United States Census Bureau, 2016). Only 12% of pediatricians in the U.S. are from racial/ethnic diverse backgrounds (American Academy of Pediatrics, 2013). There are only 5% of medical school faculty in the United States who are from diverse backgrounds (Association of American Medical Colleges, 2015). There is no specific data available within our field of pediatric hematology/oncology but given that we are a subspecialty within pediatrics, it is likely similar or even with potentially lower numbers. Nonetheless, this data highlights the need for outreach early on in the medical school training pipeline. This early outreach can initiate an important mentoring opportunity. The Diversity Special Interest Group (DSIG) of ASPHO has made it a top priority for our group’s activities to begin with early outreach where we connect medical students with faculty in the field of pediatric hematology/oncology at every ASPHO national meeting.
This year, the DSIG collaborated with the medical school of the host city for our annual meeting, the University of Pittsburgh Medical School (UPMS), to sponsor a medical student – pediatric hematology/oncology faculty meet-and-greet event. This event was held at the UPMS’ Scaife Conference Center the night before the ASPHO conference. The Division of Pediatric Hematology/Oncology at UPMS hosted the dinner event under the faculty leadership of Dr. Erika Friehling, who is the associate program director of pediatric hematology/oncology. We also had the following student leadership (1) Medical Scientist Training Program, Kevin Levine; (2) Pediatric Interest Group, Stephanie Hum; and (3) Oncology Interest Group, Theresa Reno. The networking and mentorship event held on May 1, 2018, included a presentation by Dr. Jackie Casillas, 2017–2018 chair of the DSIG on academic career pathways in pediatric hematology/oncology. This was followed by a question and answer session with Dr. Casillas and Dr. Emily Meier, 2017–2018 past-chair for the DSIG, for the 22 medical students that were in attendance. In addition, the Children's Hospital of Pittsburgh supported the opportunity for five students to attend the ASPHO conference by paying for their registration fees. The students who also were supported to attend the Pediatric Blood & Marrow Transplant Consortium were Alicia Mizes, Andrew Hughes, Mondira Ray, Kevin Levine, and Gaelen Dwyer. These selected medical students were paired with faculty guides at the ASPHO conference to help them navigate the meeting and serve as mentors to answer questions regarding pursuing a career in academic pediatric hematology/oncology.
Be the Match
In addition to the mentoring program at UPMS, we started the evening with a presentation from representatives of Be the Match, National Marrow Donor Program (NMDP), who included Lisa Maloney and Deborah Vehec. They discussed the ongoing efforts to increase the donor pool from diverse racial/ethnic communities. The U.S. NMDP provides life-saving opportunities through the bank for various hematologic, immunologic and metabolic disorders. Research has shown that there has been under representation of communities of color in the donor banks (Johansen et al., 2008). Therefore, the NMDP has recognized that targeted recruitment efforts are needed to increase the knowledge and the donor pool of under-represented minority populations (Johansen et al., 2008). The NMDP presentation included an overview of their program and statistics about who is represented in their bank. They read a letter from a thankful family and the response from the donor who was able to save the life of a child through his stem cell collection. This was followed by a question and answer period with the medical students on opportunities to be a match, as well as their targeted recruitment efforts for our diverse communities.
Our keynote speaker for 2018 DSIG workshop was Darin A. Latimore, MD, Deputy Dean for Diversity and Inclusion and Inaugural Chief Diversity Officer, Yale School of Medicine. His talk was titled “Unconscious Bias and How It Affects the Hiring Process.” There is increasing awareness in academic medicine regarding the need for targeted efforts to train healthcare providers on unconscious bias. Unconscious bias can cause disparities in both the delivery of care to patients but also result in disparities of faculty diversity within our institutions. Dr. Latimore led an interactive session with ASPHO attendees, wherein the audience were asked to participate in a self-reflection exercise on how we view different people projected onto the screen, as well as group exercises on how we can all enter a scenario seeing things we are pre-conditioned to see because of our own bias. By receiving diversity training, such as how unconscious bias affects the way we perceive people, we can become more knowledgeable and be self-reflective of the lenses through which we see someone — whether it be due to race/ethnicity, gender, sexual orientation, religion, age, or physical attributes such as height or facial expression. He encouraged the audience to take the Implicit Association Test (IAT)—one method for measuring implicit bias. As healthcare providers, we often assume that we treat everyone equally and would not evaluate faculty applicants differently due to gender or racial/ethnic differences, for example, but research has shown the contrary (Bates et al., 2016; Holm et al. 2017). However, through educational interventions, including our 2018 DSIG workshop on unconscious bias, one of the first steps of providing a solution to a problem is recognizing that it exists and which educational opportunities can be implemented. The ASPHO DSIG leadership welcomes and continues to encourage future opportunities in disparities training for future large group workshops at the national ASPHO conference.
Diversity in Clinical Research
Carol O’Hear, MD PhD
When we talk about diversity in hematology/oncology, we are usually focused on the workforce. How many physicians in leadership positions are women? How many of our fellows are African American? How many ASPHO members are Hispanic? Increasing the diversity of our profession and our organization is important. It fosters innovation, adaptability, and increased opportunities for members.
Diversity also is highly important when we evaluate medicines in clinical trials. It is well documented that many common chemotherapeutic drugs are metabolized differently by patients of various ethnic/racial backgrounds, resulting in varied toxicity profiles and efficacy levels.
Hematologic toxicities due to 5-fluorouracil are more common in African-American patients. Neurotoxicity from vincristine occurs in 35% of Caucasians, but only 5% of African Americans. Epidermal growth factor receptor tyrosine kinase inhibitors show greater efficacy in East Asian patients compared with any other ethnic group. There are likely similar differences with newer, targeted therapeutics, but labels for these drugs often lack this information due to lack of non-Caucasian clinical trial participants.
In 1993, recognizing the severe underrepresentation of minorities in clinical research, the NIH Revitalization Act of 1993 directed the NIH to establish guidelines for the inclusion of women and minorities in NIH-funded clinical research. Importantly, the statute requires that clinical trials be able to provide a valid analysis of whether the variables being studied affect women or minorities differently than other trial participants. The premise being that for clinical research to be truly useful, it must reflect the population it intends to help.
Despite the passage of this Act, a study conducted 20 years later to assess minority participation in cancer clinical trials found that the percentage of minorities remains persistently low and only 20% of randomized controlled studies published in select high-impact journals reported analysis of results by race/ethnicity.¹ Even though minority participation in NIH-funded trials has increased, these trials account for only a small fraction of all the clinical trials conducted in the United States.
Currently, around 35%-40% of Americans are African-, Asian-, Native-American, Hispanic, or Pacific Islander, yet these groups represent less than 5% of all patients enrolled in clinical trials. The percentage of minorities in the United States is expected to continue to increase, and there already are more minority children under the age of 5 years than Caucasian. Without appropriate inclusion in nonmalignant and cancer clinical trials, health disparities among racial/ethnic minorities are likely to grow.
In pediatrics, we are already tasked with evaluating the differences in toxicity profiles between adult and pediatric dosing and formulations. Still, this does not negate the importance of ensuring diversity in our clinical trial populations. Historically, given the overall higher percentage of patients participating in clinical trials, pediatric oncology clinical trials tend to outperform adult trials in terms of minority inclusion.² However, the few recent published studies looking at this issue indicate there is still some room for improvement.3,4
One interesting area of research in need of increased diversity was highlighted by a study reported in 2009 that revealed 96% of participants in genome wide association studies (GWAS) were of European descent.5 This finding prompted warnings that the range of populations in genomic studies should be broadened “to avoid genomic medicine being of benefit merely to a privileged few.”6 Although, repeat analysis showed an increase in minority participation to nearly 20%, this was almost entirely due to studies done in Asia. The inclusion of other ancestries has barely budged and remains a big area for improvement in genomic medicine.
While the barriers to clinical trial participation are multifaceted and include such things as lack of awareness, mistrust, cost, language barriers, and differences in cultural perspectives7; one critical variable for increasing minority clinical trial participation is the quality of communication between the patient/parent and the healthcare provider.
Participation in an applicable clinical trial should be offered regardless of any presumption about the patient’s social status or perceived cultural barriers. Informed consent forms should be in the patient’s native language. Most importantly, and possibly most challenging in a busy clinical practice, the healthcare provider needs to take the time to fully explain the risks and benefits of the trial, using an interpreter if necessary, and work to address any patient concerns about cost, transportation, or other barriers to participation. And, to tie this all back to the benefits of a diverse workforce, involvement of a provider of a similar racial/ethnic background may help break down some of the often-cited cultural and language barriers to clinical trial participation.7
During this era of hematology/oncology where our vision is personalized health care, understanding of the complex determinants of clinical outcomes has never been more critical. Diversity in our datasets ensures that information about biology and the relationship to disease response and toxicity is not missed. This allows the results to be accurately applied to patients across ethnicities.
1. Chen MS, Lara PN, Dang JHT, Paterniti DA, Kelly K. Twenty years post-NIH Revitalization Act: renewing the case for enhancing minority participation in cancer clinical trials. Cancer. 2014 Apr 1;120(7 suppl):1091-6.
2. Bleyer WA, Tejeda HA, Murphy SB, Brawley OW, Smith MA, Ungerleider RS. Equal participation of minority patients in U.S. national pediatric cancer clinical trials. Journal of Pediatric Hematology/Oncology. 1997 Sep;19(5):423-7.
3. Lund MJ, Eliason MT, Haight AE, Ward KC, Young JL, Pentz RD. Racial/ethnic diversity in children’s oncology clinical trials: ten years later. Cancer. 2009;115:3808-16.
4. Aristizabal P, Singer J, Cooper R, Wells KJ, Nodora J, Milburn M, et al. Participation in pediatric oncology research protocols: racial/ethnic, language and age-based disparities. Pediatric Blood Cancer. 2015 Aug; 62(8):1337-44.
5. Need AC, Goldstein DB. Next generation disparities in human genomics: concerns and remidies. Trends in Genetics. Nov 2009; 25(11):489-94.
6. Popejoy AB, Fullerton SM. Genomics is failing on diversity. Nature. 2016 Oct 13;538: 161-4.
7. Ford JG, Howerton MW, Lai GY, Gary TL, Bolen S, Gibbons MC, et al. Barriers to recruiting underrepresented populations to cancer clinical trials. Cancer. 2008 Jan; 112:228-42.
Workforce Diversity: Efforts towards Better Patient Inclusion and Shared Decision Making in Pediatric Hematology Oncology
Dominder Kaur, MD MSc
As a workforce, clinicians in pediatric hematology oncology (PHO) care for diverse patient populations—patients of different age groups and families of diverse socio-economic, religious faiths and ethnic backgrounds. Diversity in pediatric hematology oncology populations is inherent, with certain populations being affected by specific pathologies (e.g. hemoglobinopathies) and typical inheritance patterns. We need to continually expand our competence for serving our diverse patient population, while larger steps are taken towards increasing the representation of various underrepresented minority hematologist-oncologists in our specialty.
Good communication and strong patient-physician relationships have a large bearing on patient satisfaction. Being mindful of how cultural factors influence our patients’ health behaviors, beliefs and responses to medical issues, can help us establish open and effective communication channels. Involving patients and families in medical decision-making has been shown to improve patient satisfaction and can potentially reduce care costs1,2. There has been a movement towards shared decision-making (SDM) in oncology recently3, but the application in pediatrics is challenging due to factors, e.g. patient age variations4. Nonetheless, there is evidence of need for applications of SDM in PHO, with respect to decisions like fertility preservation.5,6
With decisions around life altering scenarios, it is imperative to involve patients’ and family perspectives, such as questions around end of life care decisions, addressing limb salvage or choosing transplantation. Beyond cancer-care though, SDM can be practiced in hematology for areas with clinical equipoise, e.g. types of blood and factor products, therapies like immunosuppression and their effects in the short-term or long-term, gene therapy and stem cell transplantation for non-malignant hematological conditions. Clinicians frequently face small decisions that seem insignificant to us, yet can have a large effect on the patients’ quality of life, e.g. placement of implantable vascular access devices versus shorter-term vascular access, timing of such procedures in relation to life events, timing and flexibility of prophylactic medications. These and other medical decisions can be viewed as additional opportunities to include patient preferences.
While striving to improve the service to our diverse population, it is important to make two distinctions. One, that informed decision-making and shared decision-making are not the same7. Often, clinicians identify the process of informed consent to be analogous to including the patient in the decisions. The difference lies in understanding patient preferences and valuing their motivations, while addressing their concerns in a trustworthy and open manner8. SDM does start with strong patient education and ensuring everyone in the discussion has all the facts. This should then be followed by efforts to understand patients’ preferences and inviting them to share their personal, lifestyle, cultural and family priorities and finally, engaging them in a collaborative relationship9. There are a number of models that exist to help guide one’s approach to shared decision-making, e.g three-talk model and the decisional priority model10,11.
The second important distinction is that cultural sensitivity is not the same as cultural competence12. Generally respecting others’ opinions may not translate into behaviors appropriately addressing the cultural differences between our patients and ourselves. We may have all experienced scenarios where patient interactions go better when a team member can speak the patients’ native language. While caring for a patient from a different background, social work, nursing and interpreter staff can often help us understand where concerns and hurdles to effective communications lie. These are examples of how even while being culturally sensitive, the effectiveness of patient care can be enhanced by a mediator. Such mediators or ‘cultural brokers’ are a great resource and can come in any form including a doctor, nurse, interpreter, patient’s relative/community elder, or clergymen. These brokers can act as liaisons, guides, and facilitators, enhancing communication between physicians and patients. Whatever the approach, the process towards cultural competence starts with awareness towards our own differences and biases13. By identifying these, we can prepare for patient interactions by addressing cultural knowledge gaps. Gaining insight into the patient background and culture is not very different from getting a full history before a medical encounter. Whether we do this by consulting a mediator or by developing an informative relationship with the patient directly, it is our responsibility as physicians. As long as the goal is to consciously improve health care deliver to our diverse patient population, other approaches can certainly be identified.
At an individual level, each of us can contribute towards making our workforce better equipped. One can be start with taking a few minutes to identify the resources within your practices and institutes. These maybe in the form of institutional training session for cultural competence, or other team members who could be designated cultural brokers and consultants while caring for individuals from underrepresented minority groups. As mentors to students and trainees, we also serve as a resource by sharing our experiences with health care delivery to diverse populations. A recent study showed that PHO fellowships do not have sufficient formal education programs and standard curriculum in place to address cultural awareness and understanding. Faculty role modeling and informal teaching appear as the most successful methods in practice14. While such programs are developed, the onus lies with us as teaching faculty to ensure a future workforce that is culturally sound.
Improving our current workforce’s ability to provide culturally competent care at all times is certainly an enormous task. It is another compelling reason for broadening the diversity in our field as a whole. While this shift happens, let us all contribute through our daily practices through small-scale efforts.
1. Stacey D, Légaré F, Lewis K, et al. (2017) Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev; 4:CD001431.
2. Merchant FM, Dickert NW, Howard DH. (2018) Mandatory Shared Decision Making by the Centers for Medicare & Medicaid Services for Cardiovascular Procedures and Other Tests. Jama, 320(7):641-642.
3. Hawley ST, Jagsi R.(2015) Shared Decision Making in Cancer Care: Does One Size Fit All? JAMA Oncology, 1(1):58-59.
4. Coyne I, O'Mathúna DP, Gibson F, Shields L, Leclercq E, Sheaf G. (2016) Interventions for promoting participation in shared decision-making for children with cancer. Cochrane Database Syst Rev, 11:CD008970.
5. Quinn GP, Murphy D, Knapp C, et al. (2011) Who decides? Decision making and fertility preservation in teens with cancer: a review of the literature. J Adolesc Health, 49(4):337-346.
6. Clayman ML, Galvin KM, Arntson P. (2007) Shared decision making: fertility and pediatric cancers. Cancer Treat Res,138:149-160.
7. Kunneman M, Montori VM. (2017) When patient-centred care is worth doing well: informed consent or shared decision-making. BMJ Quality & Safety,26(7):522.
8. White MK, Keller V, Horrigan L. (2003) Beyond informed consent: The shared decision making process. J Clin Outcomes Manag, 10(6):323-328.
9. Heath S. (2017) 3 Best Practices for Shared Decision-Making in Healthcare. Patient Data Access News post. Retrieved from https://patientengagementhit.com/news/3-best-practices-for-shared-decision-making-in-healthcare
10. Elwyn G, Durand MA, Song J, et al. (2017) A three-talk model for shared decision making: multistage consultation process. BMJ,359:j4891.
11. Whitney SN, Ethier AM, Frugé E, Berg S, McCullough LB, Hockenberry M. (2006) Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncology,24(1):160-165.
12. Hwang W-C, Wood JJ. (2007) Being Culturally Sensitive is Not the Same as Being Culturally Competent. Pragmatic Case Studies in Psychotherapy, 3(3):44-50.
13. Promising practices: Cultural brokers help families and providers bridge the cultural gap. (2011) [press release]. Washington, DC: Georgetown University Center for Child and Human Development.
14. Nageswara Rao AA, Warad DM, Weaver AL, Schleck CD, Rodriguez V. (2018) Cross-Cultural Medical Care Training and Education: a National Survey of Pediatric Hematology/Oncology Fellows-in-Training and Fellowship Program Directors. J Cancer Education.
Reflections on Work and Life Matters: Some Thoughts for Young Professionals
Carole Hurvitz, MD
If you are not happy with your choice of a specialty, you can change it. People say that certain specialties are easier when starting a family, but all of medicine is a commitment if you do it well. Therefore, choose what you love, not what is expedient.
Family and Children:
There never is a perfect time to have children, so do it when it feels right. I was a resident when I had my first babies—twins! What a shock! I changed their schedules so they would sleep more in the day and be up in the evening when we were home. When they were older, I insisted we eat dinner together most evenings. This is difficult because children today are so busy with sports and extracurriculars, but it can be done.
Another question some have is: should one work part time, especially when the children are small? Although others may have a different experience, when I was at home with the children, I was distracted by work and found that part-time work does not lead to promotion, opportunity, or money. I also found that you do not really command the same respect in the workplace or at home. Therefore, I preferred to work full time, pay for good childcare, and be present for the children when home. Find what works for you—happier parents have happier children!
Perhaps most importantly of all, try to have an understanding partner who is your best friend and confidant. Talk with him or her and have a date night alone at least once a week!
I felt very sad when a patient relapsed or died. I recently read that oncology is the most stressful specialty. In pediatric oncology, things are a little better, but bad things still happen and feeling sad is natural. Sometimes I felt as though I had done something wrong or missed something. However, I realized that this was usually not the case because the patient had a bad disease. I reminded myself that I did not cause the disease but was trying to help. It is important to realize that we are helping the patient and family by being there for them even if we cannot cure them.
However, I learned to compartmentalize my thoughts and not take them home. I would start to think about these things and then say to myself, “Now you must stop.” Still, I did not hide reality from my children. I feel that society regards death as something to be hidden away and not allowed into our lives. I would take the children on rounds with me and tell them about the patients (hospitals were more friendly then). I don’t know if this was a good thing or not, but three of our four boys became doctors who also married doctors.
This is a new chapter with which I have yet to come to grips. Although I do not miss nighttime calls or EMRs, I do miss the routine and camaraderie. Yet, I enjoy the freedom of retirement to travel, read, and help with grandchildren. More part-time employment opportunities and volunteer positions for late career professionals would allow our experience and knowledge to be tapped and accommodate a well-earned opportunity to contribute on a flexible basis.
Global Pediatric Oncology: Public Service and Personal Rewards
John Van Doorninck, MD
During my training in pediatric hematology/oncology, I became familiar with a basic principle of oncologic treatment: namely, for each cancer, there are variables that that help us risk stratify a cancer, predict outcome, and tailor therapy accordingly. I am forever grateful to the subject area experts who have created this body of knowledge.
However, it was not until later in my career that I became familiar with the most important prognostic indicator for a child diagnosed with cancer: the country in which he or she is born. In high-income countries, the overall survival for children with cancer is greater than 80%. However, in low- or middle-income countries, the estimated overall survival often does not exceed 35%, and is less than 10% in certain countries. Eighty percent of childhood cancer diagnoses occur in these countries. Thus, the statistics and therapies that guide me in the United States do not apply to the majority of the world.
As I became familiar with this fact, my ear started turning toward those committed to addressing the survival gap created by socioeconomic differences. I gleaned insights and inspiration through discussions with leaders in the field such as Professor Tim Eden of the United Kingdom, Dr. Trijn Israels of the Netherlands, and Dr. Scott Howard of the United States. I learned that central problems include lack of access to correct diagnosis, lack of access to treatment, later presentation to medical care, malnutrition, failure to complete treatment, and less-intensive supportive care for cancer therapy leading to increased treatment-related mortality and need to reduce the intensity of treatment.
This understanding has prompted an unexpected and rewarding development in my career—active engagement in closing the preventable survival gap. A key vehicle for this aim has been involvement with World Child Cancer, an organization whose mission is to improve cancer diagnosis, treatment, and care for children in low- and middle-income countries. Recently, we worked with Project C.U.R.E. to deliver a container of medical supplies and consumables valued at approximately $650,000 to one of our project facilities, Hospital de la Niñez Oaxaqueña, in Oaxaca, Mexico. I also accepted a position on World Child Cancer’s Global Projects Committee. Sharing the company and aims of this group is an immense privilege.
As medical professionals, we are public servants. My public service, and the reward reaped from it, has been immeasurably enhanced by understanding that the greatest prognostic factor for pediatric cancer outcomes is socioeconomically based, and by working with a wonderful team of individuals committed to address this problem.
Global Hematology – A Leveled Playing Field
Akshat Jain, MD MPH
The virtual connectivity on the cloud has brought the global scientific community to a very interesting era in medicine. My work in the field of global hematology began in Africa as a medical student in Mauritius, a small island in the Indian Ocean rim with a unique genetic intermix of Creole African and South East Asian immigrants. Observing and treating prevalence and morbidity of thalassemia major and hemophilia in a country going through the HIV epidemic was an eye opener. Ever since, in my various roles as project director of consultation to national governments and organizations, I see an important need to globally address the following issues.
The Sickle Cell Asia–Africa Divide
Over 300,000 newborns every year are affected by sickle cell disease (SCD) globally. The numbers are projected to reach 500,000 each year by the year 2050. Nigeria, India, and Congo share the highest SCD burden globally. Common co-inheritance of alpha thalassemia makes the disease phenotype less severe in Asia. Nevertheless, in my last site visit to India, I witnessed firsthand the success of the efforts around prenatal screening, penicillin prophylaxis, and immunization services. The affliction from beta thalassemia major in the subcontinent had raised the red flags 2 decades ago, leading to awareness of genetic screening and infection prevention. Wide implementation of these programs is rapidly changing these projections in Southeast Asia and India. This has culminated into overall improvement in creating expertise and infrastructure for benign hematological disorders. The outcome in African countries still looks gloomy. Replicating the success of newborn screening, universal immunization, and genetic counseling services in the West can be a game changer for disease-related morbidity in Africa.
Global Hemophilia Challenges
Due to the low incidence and high cost to treat hemophilia, this life threatening chronic bleeding disorder has not found its way to the top 10 health priority list in most countries. Awareness and international philanthropy has improved outcomes in small pockets around the world. Our epidemiological research to study the outcomes of the World Hemophilia Twinning program between the United States and India demonstrated the importance of such global collaborations. Two important challenges I have identified in developing countries where financial challenges had been met are the lack of coordinated comprehensive care and lack of trained laboratory support for performing standardized assays in the field. In most developing countries, health services are centralized to single institutions with wide catchment areas. More international exchanges are needed to build infrastructure support around laboratory testing to make the regions self-sufficient.
Iron Deficiency Without Anemia
The epidemiology of this discrete clinical entity has not been studied globally. Despite concrete scientific evidence demonstrating clinical correlations of iron deficiency and irreversible brain damage, the call to action has not been heard widely.
Few developing countries have instituted nutritional supplementation through their free food-delivery program to the poor, thereby enhancing dietary intake of iron. Still the lack of awareness of this entity and tropical disease burden in developing countries have limited clinical investigation and implementation of relatively easy strategies to mitigate health damage from iron deficiency.
Exchange of information to initiate capacity building, care coordination, and joint research has the potential to ameliorate the challenge of access to specialized care globally. It is most fitting to the field of benign hematology especially given the disparity in patient to practitioner ratio in resource limited settings. The wide availability of mobile devices and internet access even in the remotest areas of the world provides a unique opportunity to coordinate care and provide emergency access to patients globally.
Survivor to Provider
Shiley Aguilar, MSN RN FNP-C
As humans, our ties to one another lies not only in the relationships that we cultivate, but in the empathy that we bring to those relationships. Experience in life is what brings our perspective to new heights. And it is this perspective that brings empathy into our understanding.
As pediatric oncology providers, many of us have a personal story that led us to this career. Maybe it was your friend in elementary, or maybe it was your family member, or perhaps it was a rotation through the oncology unit that sealed the deal. For me, it was my diagnosis with leukemia.
It was the early 1990s, and I was a young preadolescent who was full of life and joy. I was enjoying the freedom of the beautiful and hot June summer days. Engaged in sporting activities and camps, my life was active and lovely. I was diagnosed with ALL on a sunny Friday afternoon in June of that year. Instantly, my path in life was made clear.
As with many other survivors, my experience as a patient led me to this beautiful career in pediatric oncology. My unique perspective has made me a provider that cares for patients and families with an immense amount of empathy. This empathy greatly impacts my life.
When I see a young boy cry out in pain, I can feel the searing pain with him. When I see a teenager’s sorrowful face when hair first begins to fall, my heart breaks in a thousand pieces with her. When I hear about last week’s nausea or this week’s gastritis, my stomach burns. When I hear an adolescent’s struggle to regain confidence and friendships after re-entering school, my memories flood me and my heart aches. More than two decades after my own patient experience, my recollection is real. My empathy can be crippling at times.
This empathy has a positive side as well. There is the vibrant young child telling me they swallowed a whole tablet without vomiting and my excitement skyrockets with the story. When I hear about the university that accepted an adolescent patient who wishes to be an engineer, my heart beams with joy. I intrinsically experience these small moments with my patients. I relive my own experiences alongside them. My memory can instantaneously put the bitter taste of medicine back on my tongue or the anxiety of end of therapy unknowns in my mind or the joy of another year of remission in my heart. I, by definition of being a survivor, am fundamentally wired to feel. My empathy runs deep. My empathy is what drives me as a provider.
While being a survivor-provider is not unique in and of itself, my hope is that the experiences of my life can provide a unique set of eyes with which I view my patients for the better. After all, “It’s not what you look at that matters, it’s what you see.” – Henry David Thoreau
Navigating From Handouts, Pamphlets and Posters To Hashtags, Likes and Re-Tweets
Ahmar U. Zaidi, MD
“No vaccines for us today—not with all that autism stuff,” I hear from a mother in sickle cell clinic a few weeks ago. Many of you have this conversation every single day. This is despite 20 years having passed since Andrew Wakefield’s, now retracted, findings were published, proposing that vaccines and autism have an association. Coincidentally, the report of these false findings overlapped with the rapid proliferation of the Internet. Discussions were rampant in chat rooms, and websites broadcasting his fictional narrative were effortlessly discoverable using search engines. Dialogues were occurring amply about this imperative topic without any representation from the medical community. While the message from the medical community was clear and direct—that there is no link from vaccines to autism—we missed our opportunity to connect with an evolving American public. The country was turning a new page on how it received information—not in a doctor’s office once a year, but on a screen of their choice every single hour of every single day. The problem reached exponential levels with the creation of networks like Facebook and Twitter that allowed individuals to drastically broaden their reach; I propose that this is both the problem and the solution. The proposition is that health care providers to children with blood disorders and cancer must re-think our stance on social media and the role it can play in your career.
The generation we serve on a daily basis in pediatric medicine has unique needs. The modern child—and parent—are persistently immersed in data from their phones or computers—bells, whistles, rings, and buzzes. This is why it is more important than ever for us to engage with our patients in a medium that they are comfortable navigating. We have a responsibility to provide them with accurate and important information. I often use social media, like Twitter, to share articles and practice guidelines that guide my decision making in clinic. I remind sickle cell patients to stop for a glass of water, or remember their hydroxyurea. This online aspect of the patient-physician relationship can no longer be ignored.
Further, the connections I have made with my contemporaries and key opinion leaders through social media have helped me in numerous ways. I have used social media to share pictures of fascinating blood smears or laboratory values to get novel viewpoints from colleagues. Timely alerts on recently published literature or upcoming grant or conference submission deadlines have been a welcome and beneficial addition to my own ‘screen-time’. Discussing hot topics at national conferences using social media allows you to have an inspiring conversation with fellow attendees and have your patients follow along.
Getting active online comes with its share of responsibility because once your words are online, they are forever. Tread through the social media arena as you do in clinic and the hospital—cautious and precise with the words you use. Consider that trainees, contemporaries, and, most crucially, patients are watching. If you have a provocative opinion that diverges from the standard of care but you feel strongly about — voice it. However, the derivative of this is that you are open to appraisal and on-going conversation. Ultimately, this is immediate peer-review that challenges you to be innovative in your thinking! I recognize the hesitation that many of my colleagues feel about entering the social media arena, for a variety of reasons, and I like to remind them of their responsibility to disseminate accurate information to the public. Maybe this effort will not be sufficient to drive patients to make the correct choices—but at least you are at the table and part of the conversation.
Fellowship and the Mythology of "Never Again"
Alexander Glaros, MD
“Why do you want this job?” In pediatric hematology/oncology, we were not only asked this in our fellowship interviews, but we continue to be asked it at every turn, accompanied by a pained expression that translates to: “Why do you want to be sad?” We are not paralyzed by sadness because of our belief in “never again.” We know through the work of our dedicated predecessors that our own efforts to come will find success through trying again, and again, to find cures for our patients.
The ironic challenge of fellowship is that so many of our questions are easily answered through past failures that we can study like a premillennial mythology for our young generation. We can’t truly understand with our eyes and our hearts what ‘again’ can be. At the 2018 ASPHO Conference, I watched Elliot Vichinsky debate Michael DeBaun on stem cell transplant versus chronic transfusions for sickle cell disease. I’ve read the statistics proving that these advances have made a meaningful life possible for thousands. Yet for me they are not advances, because I know no other world than the one they’ve created. These pioneering mentors have endured the metronomic, purpuric pounding of again, and again, and again so I won’t have to. They’ve touched the horizon of new possibilities we can only imagine and seen it shift with the landscape they changed, moving again to somewhere new. Now they come back to show us the way.
The road is daunting for a millennial generation with the world at our fingertips, but we know from studying the footsteps of those Vichinskys and DeBauns, those Neunerts and Parks, those Allisons and Honjos, that the horizon has been reached before, that it will move and be reached yet again. So we thank the legends of our mythology for giving us the confidence that one day we too will look back at the horizons we’ve overcome. On that day, we’ll walk back and point the way onward for a young fellow, following the path of our mentors again.
Copyright © 2019 by the American Society of Pediatric Hematology/Oncology. All rights reserved. The views and opinions expressed in the Special Feature articles are those of the author alone and do not imply an opinion on the part of ASPHO, its Board of Trustees or staff. The information in this newsletter is intended to provide readers with resources and information that they may find useful and of interest and is only current as of the publication date. ASPHO is not liable to any party as a result of their reliance on the information, recommendations, services, or resources discussed or made available through this newsletter.