The patient engagement in education and research (PEER) healthcare-associated infection prevention project: A patient perspective

Rosie Bartel, Sydney Hoel, Linda Mckinley, Kelsey Baubie, Julie A Keating, Nasia Safdar

PMID: 35101178

DOI: 10.1016/j.ajic.2021.10.011

My comments are related to the original research entitled “Engaging Veterans in Identifying Key Elements of Environmental Cleaning and Disinfection for Preventing Healthcare-Associated Infections: A Qualitative Study.”

My name is Rosie Bartel. I am a widow, mother, grandmother, and educator. I am also a patient in my 70s with extensive experience in the health care system.

Over 11 years ago, I was the recipient of a new artificial knee and, along with it, a surgical site infection. The diagnosis was methicillin-resistant Staphylococcus aureus (MRSA) osteomyelitis. Since that time, I have undergone 58 surgical procedures and been hospitalized well over 200 times – including visits for 12 unique septic shock events. As of today, I have had a total of 3 amputations (transfemoral, hip disarticulation, and hemipelvectomy), and still have low-grade MRSA bone colonization.

This ordeal and my desire to prevent others from experiencing this type of prolonged infection led me to a career in patient advisory and advocacy related to reducing health care associated infections (HAIs). I serve as the co-coordinator of the University of Wisconsin – Madison (UW) School of Medicine research program’s HAI prevention patient engagement (in education and research) or ‘PEER’ group which began in 2016. Having helped establish this partnership by securing Patient-Centered Outcomes Research Initiative (PCORI) funding, this group became actively engaged with researchers to ensure the patient perspective is incorporated at all levels in patient-care planning.

Through the partnership of researchers, community stakeholders and the patient/care partner advisory group, part of the initial PCORI funding was used to begin looking at the importance of the environment and how it is cleaned. This was a huge focus for the patient members of the project from the very beginning. They had all spent more time in hospitals than most people. The patients and their care partners had seen things in the environment of the hospital rooms that they knew could lead to infections.

The patient advisory group decided to create a list of high-touch items in a regular hospital room. This high-touch list was than shared and updated with the researchers and community stakeholders. Its content is what anyone might expect to see at any given time in a medical/surgical, non-ICU adult hospital room. By deciding how often the items on the list were touched by staff and/or patients, the items were ranked as a high, medium, or low touch item.

The other initiatives this group supported using this PCORI grant was research into the treatment of C. difficile and antibiotic stewardship. Both these initiatives also require a clean and disinfected environment to improve the patient outcomes.

After the 2-year PCORI grant work was completed by the patient/care partner advisory group, they reached out to the UW Principal Investigator, Dr. Nasia Safdar and her researchers, to continue the group. I agreed to continue as the patient and care partner coordinator of this advisory group. The way this group functions now is that the whole group meets 2 times a year with all the researchers. During these meetings, the researchers give updates on projects they are working on and how they might find the input of the patients and care partners helpful. The advisory group members then share how they might be able to help a particular research project and advise researchers on patient-centered improvements that can be made.

For myself the original research study published in this month’s journal was particularly interesting because it was a continuation of the major focus from the PCORI grant: environmental cleaning as a means to prevent HAIs. I had spent time in 5 different hospitals and one rehabilitation facility during the last 11 years. How my room was cleaned and disinfected was a huge concern for me. Many times, I was in the hospital anywhere from 5 days to over 30 days per stay. I have witnessed the best cleaning and disinfecting and probably some of the worst.

For me leaving the room wasn’t an option because I am always in isolation when I am hospitalized due to the MRSA. The other situation I had during most of these hospitalizations was I was confined to the bed because I am an amputee and I had open wounds, vacs, tubing, and other applications. The only time I was able to leave the room was to go for procedures and surgeries. Sometimes they did try to coordinate the cleaning of my room with the times I was taken out of the room but that wasn’t often possible.

I became a member of this study’s research team, and I attended their meetings, gave input on their research, helped write some articles and helped submit proposals for presentation of their findings. I proposed incorporating patient interviews into the project and subsequently gave input for the interview questions used with hospitalized patients at the Veterans Administration (VA) Hospital. I felt that this group of researchers valued my input and included myself in all the work.

The findings of their interviews were not surprising to me because most patients relate cleanliness with safe environment. For me I don’t believe the environmental services (EVS) is responsible for everything. I think every person that comes into that hospital room has a responsibility to keeping it clean and safe. One of the things that often happened to me during my stays was that everyone left things behind. I usually didn’t want a blanket on my bed so every day when they brought in the bed linens, they would bring a blanket. Instead of just putting it in with the outgoing laundry, they would let them pile up on the counter. The same was true of unused bandages, wound care products, tape, antibiotic wipes, etc. Very soon my counter was piled high with so much stuff the EVS staff would look at it and walk away.

Now I couldn’t leave my room when the Environmental Management Service staff came in, but my visitors always left because they wanted my room to be cleaned better. My husband would call the cleaning staff the “Swifter” people because many times that was how they cleaned my room because of all the clutter that was left by other staff. I must tell you that I was very careful about what I brought to the hospital and where I stored it so cleaning my bedside table would be easy. Yet many times they still didn’t clean or disinfect it. I didn’t have control over the staff clutter. I even told my family and friends not to send me flowers because they wouldn’t have a place in my hospital room for me to enjoy them.

For myself the best way I can use the information I have learned from the work I did with these patient engagement in research projects is to share it with health care professionals and providers I work with or do presentations for. After sharing my concerns about how the environment is maintained and hospital rooms are cleaned, I was asked by a hospital to share my story and how as a patient I worry about the cleanliness of the hospital on all levels. I have shared my story that focuses on environmental cleaning to health care workers at this hospital including cleaning staff. I have also shared that same presentation at the Institute for Healthcare Improvement (IHI) 2019 Forum during two breakout sessions and there was standing room only at each session.

The focus of my presentation is that my MRSA infection wasn’t caused by someone making a huge mistake. It was probably caused by a very small, unseeable speck of a germ. I also tell them that everyone that works in a hospital is a health care professional and their job is critical to the positive outcomes for all patients. My final thought I leave them with is this. I tell them that every day when they are leaving work, I want them to think about someone they love very much. Then I want them to ask themselves, if they would want that loved one to be a patient in their hospital after the job they did today. It puts the whole cleaning and disinfecting issue into a completely different mindset.

I am now being asked to share this presentation with hospital leadership, nursing staffs, physical and occupational therapists, food service personnel, and all other support staff. I have done this presentation for several hospital vendors like laundry services, chemical companies and construction companies that do health care renovations. I am invited to a weekly meeting at a hospital that is doing a major renovation and construction for a Neonatal ICU because they want me there to ask the cleaning and disinfecting questions and make sure the patient’s concerns are being addressed as they work.

Every time I share my story about how important having a clean environment is to patients and their families, I talk about how important it is to have patients work with researchers.