April 30, 2012
Posted in Patient Safety

I just returned from Hadley, Massachusetts, where I attended the first gathering of NorthEast Voices for Error Reduction (NEVER), a regional coalition of patient safety advocates. Despite often being lost in “acronym hell” because most of the other advocates are much more experienced than me, it was an amazing experience with a great group of people.

Patricia & Christian at NEVER
Co-founder Christian John Lillis with NEVER member, Patricia Kelmar

NEVER grew out of the Consumers Union Safe Patient Project (where many of us first met) from a desire to be more connected with the work each other is doing in our state, to identify areas where we can collaborate across states, and learn from each others’ experiences, good and bad.

I had been communicating with most folks in the group since I attended the Consumers Union Safe Patient Project Summit in October. While most of the day was taken up with a lot of conversation about logistics, putting together a website for NEVER, and other stuff that’s “inside baseball”, I did come away with some observations I’d like to share.

First, we talked quite a bit about how to get more people involved  in the patient safety movement. Of the 9 people at the meeting, two are employed by consumer organizations. The rest of us had all lost a loved one to negligence, medical errors, a hospital-acquired infection, or some combination. We wondered how we could reach out to more people on the periphery. Through our foundation, we have so many wonderful supporters who donate, volunteer and spread the word, but when compared to the magnitude of the problem we remain the David starting up at Goliath. So how do we get more people involved in patient safety issues (and, more generally, qualify health care) in a meaningful way?

That brought me to my second, related observation. The “price of admission” for becoming an effective patient safety advocate is very high in a number of ways. The primary cost seems to be losing someone you can’t bear to live without. For me and two other advocates, it was our mother. For another two, it was their father. Another woman’s husband had his spinal cord accidentally severed during an unrelated surgery. He lived as a paraplegic for 18-years before succumbing to problems related to his loss of mobility. He was only 50.

Beyond our grief, which is often our entry point into this work, to be a patient advocate in this massive and complicated overlapping series of corporations, nonprofits and government agencies that compose the US health care system means to be at the bottom of an enormous learning curve that you will probably never master. I’ve been at this for two years now and the amount one could know is staggering. The very complexity of our health care system is often a barrier to a huge swath of Americans being engaged in reform. Finally, in a country where most families require two incomes (not to mention the single parents), being an advocate takes time. I should note that there are other members of NEVER that couldn’t join us because they couldn’t get away from their job, or have family obligations, or other normal things that meant they couldn’t get to Hadley today.

Lastly, I couldn’t help but notice how involved nurses are in the patient safety movement. Of the 9 advocates assembled, four hold nursing degrees. We also met another nurse in the hotel this morning who was happy to share her experiences with us. My aunt, Helen, who serves as an adviser to the foundation, is also a nurse. This is not to say that doctors or other healthcare providers are not interested in patient safety, but my experience definitely skews towards nurses being the foot soldiers in this battle. I suspect that relates back to time. Doctors, generally, work longer hours than nurses. And nurses, generally speaking, spend a great deal more time with their patients then doctors do by simple virtue of their unique roles in health care delivery.

I’m excited that The Peggy Lillis Memorial Foundation is part of NEVER. I’m confident that Mom would have liked each and every member of this tireless group, particularly the extraordinary moxy on display. I also look forward to keeping the Peggy Foundation family informed of NEVER’s progress and sharing other reflections as they come up.

In closing, I want to offer a shout out to the folks I spent today with and encourage you to visit their organizations’ websites and get involved in your state.

Jean Rexford, Susan Manganello, and Lisa Freeman from the Connecticut Center for Patient Safety

Lisa McGiffert from Consumers Union Safe Patient Project (double shout out to CU for covering our lodging and food!)

My compatriot from New York state, Martha Deed (check out her awesome online book, “The Last Collaboration” about her late daughter Millie whom we lost to medical errors)

Lori Nerbonne from New Hampshire Patient Voices

Kathy Day a retired nurse and patient advocate from Maine

Patricia Kelmar a consultant on patient safety issues (pictured above)

Jean and Lori at NEVER Meeting

Jean Rexford (speaking) and Lori Nerbonne (taking minutes) at the NEVER Meeting


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  1. Christian,

    Very thankful to have you and The Peggy Foundation as part of NEVER.
    Thanks for the great post.

    1. Christian says:

      It was a pleasure spending time with you and the other NEVER ladies. Hope to see you soon.

  2. Jean rexford says:

    Everyone plays an important and very different part in creating an exciting synergy

  3. Hats off to all of uou for being able to do this
    Collaboration….this is the way to go!

  4. Individually, you all have accomplished many great things that advance patient safety. Working together can only magnify the advocacy presence in the Northeast region that will help educate and save more lives! I’m looking forward to working with you.