Wednesday, May 1, 2013

Helen Haskell: Where is the Patient Safety Movement Going?

Helen Haskell
Who in the patient safety movement does not know Helen Haskell? She has been an iconic trail blazer since an agonizing experience in which "we entered the hospital with two children and came out with one".

For many of us working on patient safety, back when we were first trying to make sense of our own loss, Helen was one of the first people we reached out to. She ushered us into a community of people who made us feel we were not alone.

What you may not know about Helen is that her training as an archeologist offers a unique lens through which to see the evolution of patient safety. This interview will cross-post this week  on the website of the annual Congress of the National Patient Safety Foundation (NPSF).

Helen Haskell
President, Mothers Against Medical Error
Years attended NPSF Congress: 7

Pat Mastors: What brought you to patient safety in the first place? Can you share one iconic personal moment of impact or motivation?
Helen Haskell: My life story really breaks along the lines of the new millennium.  Before the year 2000, I was an archaeologist and late-life graduate student working on a dissertation in West African prehistory. I had been in various parts of the world of archaeology for a long time. I had an undergraduate degree in Classics from Duke, an MA in Anthropology from Rice, and had worked in Rome, Israel, Africa, and the southeastern US.  I had taken several years off to be with my two children, high achievers of whom my husband and I were really very proud.  But in November of 2000 everything changed. We took our 15-year-old son to the hospital for an elective medical procedure to correct a congenital defect of the chest, pectus excavatum, a relatively common condition in which the breastbone does not grow straight. We thought it was a routine procedure, but things went wrong. We entered the hospital with two children and we came out with one. 

It was a searing, unspeakable experience.  Our son had slowly died from a severe medication reaction while his nurses and residents seemed unable even to respond to our pleas for help.  I was stunned at the disorganization we had witnessed and felt that my son’s death would be meaningless if we did not do all we could to change this situation. And that is really what has propelled me forward: the overwhelming need to find meaning in what would otherwise be the senseless loss of this child who we thought was going to be a rising star of the next generation.

I was fortunate enough, if you want to call it that, to be one of a group of patient safety advocates who came along at a moment that was ripe for reform. The Institute of Medicine report on medical error had just come out and while there was a good deal of resistance to the numbers it cited, there was also growing momentum for change. We were able to ride that wave and make the patient’s voice part of the process. There have been many moments that seemed iconic to me – moments when it felt as though we had tapped on a door that had been sealed shut for years only to watch in amazement as it slowly creaked open.  For me personally, some of those early moments happened when the medical interests in our state dropped their opposition and became supporters of our patient safety legislation; when the state endowed a chair of patient safety and named it for my son; and when our infection disclosure bill passed the legislature unanimously and we then watched similar legislation pass in state after state.  Nothing is necessarily permanent, but we felt, I think correctly, that successes like that meant that the patient safety movement was here to stay.

Pat Mastors: What is the most encouraging thing that’s happened in the past year in Patient Safety? The most concerning? 
Helen Haskell: The past couple of years have been very exciting.  In some ways it feels as though the field of patient safety has literally exploded. Many of the goals we have promoted for years suddenly seem to have become accepted – things like public reporting, infection surveillance, checklists, disclosure of adverse events, and even just the idea of coordinated effort to prevent hospital-acquired conditions.  Patient engagement is finally getting its due, although there is still a good deal of confusion as to how to go about it.  A great deal of this forward movement is due to the Accountable Care Act, which provides both the impetus and the funding for initiatives like PCORI and the Partnership for Patients.  But I think it is also true that we have finally reached a tipping point.  Patient safety is in the air.

My biggest concern is the ongoing problem of overtreatment. While overtreatment is beginning to be addressed in initiatives like safe birth programs, I worry that there is still too little momentum.  We live in a society that is steeped in the idea that medicine has a cure for everything and that incentivizes overuse by both patient and provider.  We can’t have safety until we have moderation, but I think we have a long way to go before the concept of moderation in medicine is considered a virtue.

Pat Mastors: What will you uniquely bring to the discussion at the Congress? 
Helen Haskell: I have always felt that having a background in the humanities and social sciences provides me with a different and useful perspective on medicine. As I think all patient advocates do, I always scan the horizon, trying to see how the pieces fit together, but at the same time my natural way of looking at things is through a deep historical lens. When we get discouraged, it is good to keep that in mind that change is always slow. Big reform movements like civil rights, women’s rights, and conservation were decades in the making, with many setbacks. I am not saying that slow is good, but I do think we need to view our cause as a social movement rather than the remodeling of an industry.  Medicine is more than just an industry, and patient safety involves large, comprehensive issues that reach far beyond safety into human rights, human dignity, and human kindness.

Pat Mastors: Where would you like to see more energy focused?  
Helen Haskell: In a word: transparency. The consumer movement has always focused on the idea of transparency, and for good reason. The immediate, practical reason is that transparency is something that outsiders can affect through the public process, without having to make unwelcome judgments about medical practice. But transparency also affects quality quite directly. The transparency we have now is really very rudimentary, but it has already had a big effect on practice.  It forces measurement, self-assessment, and accountability. It is the lever through which mountains can be moved. 

Helen Haskell is president of Mothers Against Medical Error, a member of the NPSF Board of Governors, and a director of Consumers Advancing Patient Safety, the Nursing Alliance for Quality Care, and the Institute for Healthcare Improvement.  She has collaborated with Consumers Union on patient safety issues, including hospital-acquired infection disclosure, since 2005. She has been working in patient safety since the medical error death of her son Lewis Blackman on November 6, 2000.


  1. Helen: An Island of Excellence indeed!

  2. Helen's quiet but determined, supportive and confident manner make her an advocate we should all emulate.

  3. Helen is absolutely the guiding light in the storm for almost every new mother who has lost a child to medical error. As much good as she has done with her public work, the comfort and support she has given to countless families over the years is impossible to measure.
    Keep fighting the good fight Helen, we all need you

  4. I consider Helen to be a wonderful mentor for all advocates. Despite her years of advocacy and collaboration at the highest levels, she remains a "true blue" patient advocate. Her vision and focus is that of the patient. Thank you Helen for your contribution to patient safety and for your friendship and support to so many of us.

  5. Thank you all for your comments...if you did not see it on Facebook, Helen says she's very humbled by the support you've all expressed :)