Meet Helen Haskell | World Patients Alliance

This section features Questions and Answers with Helen Haskell, Chair, WPA Patient Safety and Quality Council.

Patients’ Voice is WPA’s quarterly Newsletter opening windows to news, activities, interactions and events organized by WPA, its member organizations around the globe and the international stakeholders working for patient safety and quality healthcare. Patients’ Voice features an interview with the top-tier WPA management in its quarterly issues and in May 2024, this is the time to meet Helen Haskell. Patients’ Voice thanks Helen for sharing her story.

Patients’ Voice: When did you first get involved in the nonprofit world/community?

HH: I got involved in patient safety nearly 24 years ago, when my 15-year-old son Lewis died in an American hospital following elective surgery. He was a perfectly healthy boy and died due to neglect by inexperienced nurses and trainees. Two years after my son’s death I and several other parents from my state decided to start the advocacy group Mothers Against Medical Error. By joining with others, we gradually went from working at a state and local level, to nationally and then internationally.

Patients’ Voice: What led you to get involved?

HH: I was completely undone by the death of my child. I spent years delving into the medical literature and talking to anyone who would listen, trying to make sense of it all. I was shocked to realize just how much dysfunction pervaded the medical system, not only in the United States but globally. When we began, we were aided by the fact that patient safety was the focus of a lot of attention. The influential Institute of Medicine report, To Err is Human, had laid out the problem of medical error only a few years earlier, and all of us – patients, providers, and administrators – thought we could solve these problems easily if we just brought the proper methods to bear with enough determination. That turned out to be naïve. We did solve some problems in safety and quality, but new problems constantly arise and there is now entrenched resistance to expending resources to address them.

Patients’ Voice: Is your background in nonprofit management or were you involved in a career when you began your work with Mothers Against Medical Error?

HH: Patient advocacy and the nonprofit world were a complete pivot from my earlier life. My background is in archaeology. I had worked on archaeological research at sites from several different eras in different parts of the world. At the time of my son’s death, I was writing my dissertation in West African prehistory. But after Lewis died, I was not able to concentrate on anything else. I began working full-time to pass patient safety legislation in my state. I viewed this as my son’s legacy and everything else seemed irrelevant. I took a leave of absence from my studies and never returned.

Patients’ Voice: What would you say is the most rewarding part of working with a nonprofit?

HH: The most rewarding part? First of all, I would say the opportunity for collaboration. I have been fortunate to work with people from all sectors of the patient safety and quality world. From the time people learned what had happened to Lewis, we were never alone. Those early friendships developed into an active alliance that was the driving force of the campaign to pass our patient safety legislation. Ultimately, we ended up working closely with groups who had initially opposed our efforts. I later served in leadership positions in a number of influential patient safety and quality organizations and had the privilege of learning from some of the leading thinkers in the field. I have never stopped researching, writing, and networking, and it is satisfying to feel that I have achieved a pretty comprehensive grasp of the issues in healthcare, which I think is probably the most complicated field in the world to understand. Even more rewarding is the feeling that I am in a position to help people. Harmed patients often reach out to us. We try to bring them into the movement and we offer them support, assistance, and hope, which is something they sometimes have little of by the time they find us.

Patients’ Voice: What is the most challenging part of working with a nonprofit?

HH: This may sound trivial, but the most difficult part is that the demand for our services seems unending. I see others in this space worrying about funding, but that is not an issue for us. We are a volunteer organization and don’t need much money for what we do. We serve on committees, work on grants and research, write articles, create educational materials, and advise and support patients. There are never enough of us to go around.

Patients’ Voice: What would you tell someone who was thinking about working or being involved with a nonprofit health organization?

HH: I would say go for it. It is immensely rewarding to feel you may be making changes that will better people’s lives. But don’t expect to make a living at it. The rewards are definitely not financial.
The other thing I would caution people about is that healthcare is a massive, cumbersome bureaucracy that reaches around the world. It is set in its ways and has problems that go back generations. Advocating for healthcare improvement is a long game that requires a lot of patience.

Patients’ Voice: What are you most proud of because of your work in the nonprofit world?

HH: I think we have been able to accomplish a lot with very limited resources, by reaching out to people of all backgrounds and by being able to help others achieve their goals. Most rewarding is the thought that we have succeeded in bringing the patient’s voice to the fore after so many years of effort. Have we achieved all that we want? Not by a long shot. But we are much further along than I would have imagined 24 years ago.

Patients’ Voice: If you want, you can share a little bit about you. The number of kids, pets, and anything things else that would put a more personal spin on the article.

HH: I am married to my husband of more than forty years. Our daughter has a degree in historic preservation and works in the western US.