Haley MacLeod

Rare Opportunity

Program: Ph.D. in Informatics, health informatics track, 2017

Hometown: Calgary, Alberta, Canada

Bloomington Favorite: The Farmer's Market


If you’re suffering from a rare disease, you’re not alone. There are 30 million people in the United States going through the same thing.

And Haley MacLeod wants to help.

“Rare diseases, by definition, impact a really small number of people,” says MacLeod, a Ph.D. student in health informatics. “But when you look at the 7,000 rare diseases that exist, a huge number of the population aren’t getting the resources they need. I’m interested in the common experiences that come up as a result of having something so rare and ways we can support that through online social communities or through tools to connect with family members.”

MacLeod graduated from the University of Calgary in 2013 with a degree in commerce and a minor in computer science. While in Chicago for a conference during her senior year, she met IU Associate Professor of Computer Science Kay Connelly. The two realized they had similar research interests, and Connelly encouraged MacLeod to attend grad school at IU.

She did just that with an eye on pursuing a Ph.D., earning a master’s in human-computer interaction with an emphasis on health along the way. Deciding on which direction she wanted to go with her research wasn’t easy.

“I think part of the challenge is trying to define some sort of real problem that is actually solvable in a Ph.D.,” MacLeod says. “I started working with people who have rare diseases, and it can become overwhelming hearing all of their stories and what they’ve been through. It seems like there is so much work to be done, and I only have a limited amount of time to earn a Ph.D. I’m not going to be able to solve everything. Trying to decide what is most urgent and most important, and where I could make the biggest difference in the time that I have was tough.”

MacLeod’s work doesn’t focus on looking for a cure. She leaves that challenge to others. Helping people cope with rare diseases by allowing them to live fuller, richer lives is where MacLeod comes in.

“What excites me the most is technology that can really make a difference in the lives of everyday, normal people, especially in the context of people who might have a chronic disease that isn’t their only priority,” MacLeod says. “I’m interested in ways technology can help them balance picking up their kids from soccer practice with trying to get exercise. I want to find a way to help someone manage their diabetes while still allowing them to go to dinner with their friends.”

MacLeod’s time at SICE also helped her score an internship with PARC, a Xerox company. She interviewed with the company at the Grace Hopper Celebration of Women in Computing last fall, and it has given her an opportunity to see the industry side of research that she had been missing during her years in academia. MacLeod is getting a different perspective and working with new tools and methods.

That plays into her ultimate goal down the road.

“I’m not sure exactly where I will be three years down the road, but I would like to be working as a researcher in a lab or in a company in industry,” MacLeod says. “I think within that technology domain, it would make me very happy.”

The Calgary native is thrilled to have a really supportive pro-health research group, and she couldn’t be happier that she landed at IU.

“It has been a great experience for me,” MacLeod says.