This is the 20th in a series of interviews between CFAH President and Founder Jessie Gruman and patient and consumer group leaders about their experiences with and attitudes toward comparative effectiveness research (CER).
Gruman: Tell me about yourself and your organization.
Jennifer Dingman: I got involved in patient safety many years ago after I lost my mom in early 1995 due to medical errors. While my mom was in a coma for seven weeks, I met other families in the ICU. Many of them – the majority – had unanswered questions. I really connected with them. After my mother died, I had trouble communicating with her doctors. Some would talk with me, others wouldn’t. But I continued to have a relationship with the families I had met while going through this.
We started to have support group meetings at a local library to talk about the experience of having a family member in an ICU. We named our group PULSE, which stands for Persons United Limiting Substandards and Errors in Health Care. We had been collaborating with other advocates and groups throughout the U.S. back then, and it was after the first year that these groups began to use the name PULSE. By 1998, we had started a community with the Federation of Medical Boards and later with the National Patient Safety Foundation in August of 1999.
Gruman: Where do you see comparative effectiveness research (CER) fitting in the effort to improve the effectiveness of health care?
Jennifer Dingman: I think CER is very important. Not only is it important to continue to do it – I think there needs to be a PR campaign for patients to tell them what CER is and to urge them to participate as much as they can.
Gruman: Tell me how your organization views the relationship between CER and patient-centered outcomes research (PCOR).
Jennifer Dingman: It is vitally important that patients know what medications they are taking and what they are for. And we are very big on making sure that people take their medications to every doctor visit. PULSE created and sponsors the Purple Envelope List. For this project, people make a list of their medications and put it in the freezer in a purple envelope. In the communities where this is done, PULSE has notified the local paramedics and rescue teams with the location and a description of the purple envelope. We also think medication labeling is critical: every patient should ask their doctor to make sure the indicators for each medication are listed on the bottle or container.
Gruman: Can you give me an example of how your constituents have been affected by CER?
Jennifer Dingman: I think when people are educated enough to ask questions, they will learn more. Most people don’t know what CER is. The leaders of our group have to do their own research. If you are an insider, you hear about CER all the time. If you are a consumer, you have no clue. We need to know. Our constituents don’t know. We tell them to ask more questions and suggest the kind of questions they should ask.
Gruman: How do you see the increased attention to CER affecting the care your constituents will receive in the future?
Jennifer Dingman: I think CER is a good thing and that eventually it will save many lives. When you start looking at CER, you’ll learn a lot. You have to keep in mind that each patient is an individual and what works for one might not work for another. In the larger scheme of things though, the public needs to know what CER is, and they need to be the ones – them and their families – who make these decisions.
Gruman: Some professionals believe that patients are opposed to CER. Do you think this is accurate? If so, what do you think is behind this view?
Jennifer Dingman: I’ve heard that some providers think that, but I haven’t seen evidence in the patient world. Patients have never heard of it.
Gruman: What are your fears and hopes for CER?
Jennifer Dingman: I fear that too much money has gotten into CER through politics so that it isn’t going to find real evidence that will make a difference to people’s lives.
My hopes outweigh my fears, though. I think CER is a good thing. But it must be transparent. It just shouldn’t be that hard to get information. No one should have to pay for evidence and everyone should be able to communicate it to patients. This is not the government’s job but they should make it available to consumer groups to get information to their constituents. They also should advertise the availability of CER results.
Medicine is so complicated. This information needs to be made accessible and simple, and if that can’t be done, it needs to be made available to those of us who can translate it for the public.
Keep it simple, keep it safe.