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When Neil Sullivan — a nonverbal individual with profound autism and a complex array of medical conditions — aged out of pediatric care and began seeing adult-care physicians, some doctors dismissed behaviors that they thought were related to his autism rather than to his health, said his mother, Maura Sullivan.
It was frustrating for both her and her son to see his symptoms go unheard and untreated.
“They didn’t see the significant medical conditions that might have been causing him to be aggressive or sleepless,” she said.
Harvard Medical School’s Office for External Education (OEE) offers programs that aim to make scenarios like this less common. Its newly launched Adult Autism Health Resources website provides tools for autistic adult patients and their families and its Clinical Care for Autistic Adults course educates physicians, nurses, and health professionals.
Autism resources represent just one of the ways OEE has worked for 10 years to bring the HMS community’s expertise, evidence-based practices, and research to learners around the world — including medical students and trainees, health care professionals, corporate leaders, and patients and families.
Through in-person, blended, and online programs and courses, as well as published content, OEE develops educational opportunities intended to prepare learners to anticipate and shape the future of medicine and health care.
For instance, a self-paced, online certificate program set to launch in April focuses on how to implement and design AI solutions for health care. And the growing collection of HMX interactive online medical science courses explores foundational as well as advanced topics important for a variety of health care careers.
As OEE marks its first decade, its leaders are taking a moment to reflect on the impact their work has had so far.
“As we reflect on the Office for External Education’s first decade with an eye toward the future, I feel an extraordinary sense of gratitude,” said David Roberts, HMS dean for external education. “Our faculty and staff work tirelessly amid a massive, complex, and ever-evolving global health care landscape to bring HMS to the world. I can’t wait to see what the next 10 years will bring.”
Building on HMS’s legacy of offering accredited continuing medical education that dates back more than a century and published consumer health information since the 1970s, OEE is guided by the School’s commitment to provide an inclusive environment for learners as it supports the HMS mission to improve health and well-being for all.
Here are some recent examples of how HMS faculty, learners, and patients have shaped and benefited from external education experiences.
Patient experiences set the course
Maura Sullivan, senior director of government affairs and health policy at the nonprofit The Arc of Massachusetts, served on the patient experience board for OEE’s autism course and related resources. She helped guide the development of the website that helps autistic adults and caregivers ensure that they receive competent health care, understand their health care rights, navigate insurance coverage, and organize care details.
“I don’t think there are other resources like this that go so deeply and take into account the lived experience,” she said. “I absolutely think this is going to be used across the nation and the world. I think it’s an incredible tool.”
Sullivan noted that the number of people with autism continues to grow, as more children are diagnosed and as children age into adulthood. Autistic individuals often have intellectual or physical disabilities, and the National Institutes of Health recently designated people with disabilities as a group that experiences health disparities.
“We want to help the health care workforce become more confident in treating patients with autism. If they are prepared, they will jump in and do it,” Sullivan said. “That is far preferable to families struggling to find health care and then maybe ending up at the emergency room.”
Neil Sullivan also helped OEE develop the autism course by allowing one of his doctor’s visits, complete with physical exam and blood draw, to be recorded to demonstrate clinical care best practices.
Clinical trial volunteers guide science
Salim Bouguermouh was working as a physician-scientist when he participated in OEE’s Global Clinical Scholars Research Training certificate program (GCSRT) in 2014. He mastered skills in the program that helped him make a career move into the pharmaceutical industry, landing a senior management position at Pfizer in 2017.
The HMS training played an even bigger role in his career when the COVID-19 pandemic hit. As the novel virus caused illness and death, Bouguermouh worked long hours in virtual meetings with researchers from around the world to advance clinical trials for the Pfizer-BioNTech COVID vaccine and to accurately report results.
In addition to feeling fortunate to have been part of the effort, Bouguermouh said that the technical and scientific skills he sharpened in the GCSRT program contributed to his team’s success — and that the managerial and people skills he honed there were especially important.
“We scientists have a tendency to forget that soft skills are critical,” he said. “I didn’t know what to expect from the program, but retrospectively, it was really well designed.”
Bouguermouh recalled that along with topics such as statistics and data publication, the program covered teamwork, social skills, and the ethical aspects of working with patients. The faculty emphasized that clinical trial volunteers are not just experimental subjects, but people.
During their group projects, Bouguermouh said, he and his classmates considered the number of visits a volunteer would need to make, their weekday and weekend schedules, and how to reduce the number of samples they would need to give.
So meaningful were these lessons that Bouguermouh continues to minimize any unnecessary burden on volunteers when designing clinical trial protocols in his daily work.
“We maximize anything that makes their lives easier — even if it’s more expensive,” he said. “We value their contribution to science.”
A cancer patient lights the way
Contributing to science is something Chuck Stravin knows well. Living with metastatic kidney cancer, he has advanced research and helped extend other patients’ lives by participating in six different clinical trials.
Although Stravin has had to step back from his career as an operating executive to focus on his health, he said educating health industry leaders through OEE’s corporate learning programs has restored a sense of purpose and control over his life.
So far, he and his oncologist Toni Choueiri, the Jerome and Nancy Kohlberg Professor of Medicine at HMS and Dana-Farber Cancer Institute, have led a handful of program sessions. Stravin has been impressed by the companies and range of employees participating, including research and development scientists and sales and marketing managers.
He said the programming is valuable because “some of these people have probably never spoken to a patient before.”
One of Stravin’s most gratifying moments came in a custom program for a pharmaceutical company, when participants gained a better understanding of the perspective that patients like him can be satisfied with a partial response to treatment, meaning that a drug protocol has not fully eliminated a cancer. The participants’ perspective changed from considering anything other than a full response as a failure to understanding that a patient with metastatic disease might define partial response as a success because it extended the quality or length of their life.
Stravin also enjoys discussing informed consent. He emphasizes the need to simplify trial paperwork so it is not written solely from the perspective of lawyers hedging against potential litigation and focuses more on what the patient is likely to experience and why they would want to risk potential side effects to participate in a trial.
Fewer than 12 percent of people with a metastatic kidney cancer diagnosis live beyond five years. Stravin is coming up on year eight, celebrating milestone life events with his wife and four adult daughters, such as graduations and a wedding, and pursuing his new calling to advocate for kidney cancer awareness and teach in the HMS corporate education classes.
“When you see that aha moment, and the participants’ eyes brighten as if to say, I get that, I understand it — it’s pretty cool,” said Stravin. “I’m really happy and proud.”
The Adult Autism Health Resources Initiative was made possible by the Nancy Lurie Marks Family Foundation.
