Are enough patients engaged in safety issues?
Some say not enough "real" patients involved
The argument goes that given long enough, someone we know, or we ourselves, will be in a hospital, so any one of us, plopped into a hospital committee, counts as a "patient" or "family member," right?
Not so fast. Some say that notion means that the voices of healthcare insiders are strong, while those of regular people who aren’t aware of all the issues, who don’t speak the language, and who may not be as comfortable speaking up to folks as lofty as brain surgeons and nurse anesthetists are left out of discussions on what could make healthcare better and safer. And when it comes to making it better and safer, the voices you may find most helpful are those of the outsider.
It is not an argument that insiders completely disagree with, says Susan Edgman-Levitan, PA-C, a board member of National Patient Safety Foundation (NPSF), and chair of the roundtable that released Safety Is Personal, a report on consumer engagement in patient safety through the NPSF Lucian Leape Institute. (See related story, page 61.)
The very report came under fire from patient safety critics such as Doug Wojcieszak, the founder of Sorry Works!, a patient and family advocacy group. He counted just five of the people involved in creating the NPSF report as true consumers, or 13% of the total — a number Edgman-Levitan and others dispute, putting it at triple that. "Sure, everyone is potentially a patient, and we’ve all had family in a hospital. But when you only have 13% representation in a room of insiders, the discussion gets skewed. They talk shop. The consumers may feel cowed."
Wojcieszak says he knows each of the five people he calls a consumer listed in the report, and while they are "inside" enough at this point — working for large patient advocacy groups or other consumer-related organizations that they are sure of their voices and opinions — he believes the conversation would be different if there was a larger percentage of regular people involved.
Helen Haskell, the president of Mothers Against Medical Errors in South Carolina and one of the people involved in the Safety Is Personal report, says that in some ways, she is of a mind with Wojcieszak, but when it comes to creating overarching policy reports, it is often better to have people who are knowledgeable about the healthcare industry involved. In the particular case of the Safety Is Personal report, she believes "there was enough of my kind of voice" involved, and that the patient advocate voices that were there were strong and impassioned, which is what you want, she says.
"I look at the list of people and see some of the most significant champions of patient engagement I know of," says Leah Binder, MA, president and CEO of the Leapfrog Group in Washington, DC. "There are some people there who are really bold who were involved, who are willing to champion the cause of patient engagement and don’t have a side interest."
In the end, having half the committee made up of patients might not have made a difference to the fiercest critics. And it wouldn’t have done anyone any good to take people who were completely green and put them around the table either, says Haskell. "When you are talking about this kind of big picture thing, it is important to have a degree of experience and expertise," she says. "Then you don’t spend a lot of time having to go over things like definitions, and people won’t be overwhelmed by the scope of the issues we are trying to come to grips with."
