When Sarah* came to a rural health center for a six-month checkup after her pregnancy, she said she was comfortable working with the health center staff, from the front desk to her doctor. But she also reported in an interview afterward that she had trouble getting transportation to and from the clinic, and that her health plan does not fully cover the cost of her prescriptions. She wasn’t asked during her visit about these concerns.
Sarah was interviewed as part of MCN’s project, “Clear on Cost: Conversations between Health Center Patients and Providers about Cost of Care,” which aimed to evaluate and enhance conversations about the cost of health care between clinicians and staff at Community Health Centers and their vulnerable patients – predominantly foreign-born, Latino patients below 400 percent of the Federal Poverty Level. This population was chosen for study because health care cost issues are potentially more likely to affect their ability to follow through with recommended care. The one-year project, funded by the Robert Wood Johnson Foundation was extended into early 2018 to finish data collection and analysis, and a final report will be issued later this summer.
MCN’s research team, composed of Douglas D. Bradham, DrPH, MA, MPH, Principal Investigator; Deliana Garcia, MA, Project Director; Alma Galván, MHC, Senior Program Manager; and myself, as Quantitative Research Analyst – and many helping hands elsewhere in the organization as well as volunteers – conducted 85 bilingual patient interviews at six health center sites in Pennsylvania, Puerto Rico, and Texas. We then compared the patients’ responses about elements of their health care visit to interviewers’ observations about the visit, as well as clinicians’ own perceptions of their conversations and intent with the patient.
“We’re on the ground floor of research” on this topic, Dr. Bradham said. He explained this is an exploratory study, allowing us to describe the current state of conversations about cost of care happening in these studied health centers.
At a training to improve awareness about cost of care conversations, one of the clinic’s directors challenged his team:
“Unless we are willing to engage the patients in these cost of care discussions, why should they be engaged?”
The stated goal of the study was to make patients more involved in shared decision-making and cost of care conversations.
We found that 55 percent of observed visits included some discussion of cost – from the cost of treatment and supplies, to co-pays for prescriptions, to the cost of having to take time off work – but that only 19 percent of patients recalled any discussion of cost, indicating that patients are either relatively insensitive to these discussions or need assistance recalling them. One barrier to patient retention that interviewed clinic staff reported is that insurance terms are complex and patients often didn’t understand them – perhaps because common and understandable language is not used. In response, we developed Cost of Care resources [2], including a slideshow of common insurance terms and a handout or poster describing how typical health insurance works for clinics to share with their patients.
The study also found that a majority of patients (56 percent) never asked their provider for an alternative to the recommended care for any reason (for example, because of a reaction to a medication), while 15 percent said they always did. But we found that 81 percent of respondents said they had never asked for an alternative treatment specifically due to cost, and only five percent said they always did. We found patients had a high level of trust and comfort with their providers and clinic staff, and a majority of patients said they were comfortable talking about sensitive topics with their provider.
So if patients are comfortable talking about finances with health center staff, but aren’t willing to bring up the topic, does the health center have a responsibility to ask the questions about cost?
The literature we reviewed [3] suggested that 10 percent or more of patients either delayed or avoided medical care because of cost. (That number also doesn’t include the possibility that, among the remaining 90 percent of patients, adherence to treatment plans might be improved if costs were reduced.)
As part of the movement toward patient-centered care, we believe that including patients and their families in collaboration with health care professionals in making clinical decisions is important – and must include consideration that finances can be an impediment to patients’ ability to follow through with those clinical decisions.
So what can health providers do to be empathetic toward their patients’ cost of care concerns, and understand and respond to them? And crucially, how much time out of an already hurried visit will that take?
At a presentation at the National Association of Community Health Centers’ Policy & Issues Forum in Washington, D.C., in March, I joined Dr. Bradham and Jillian Hopewell, Director of Education and Communication, to share early findings of the study with an audience of health center personnel, from nurse practitioners to members of boards of directors. Among the main concerns the audience shared were who was responsible for bringing up cost of care concerns during the visit, and how long it would take.
The good news is that a previous study [4] found that cost of care conversations most often (67 percent) took less than one minute; only rarely (six percent) did the conversation take more than three minutes.
MCN’s research team drafted a template for a cost of care clinic policy, which includes suggested content of the cost of care conversation, a breakdown of who is responsible for talking about what, and a suggested procedure of a typical visit.
The research project, initially scheduled to be completed in early 2018, is still being wrapped up.
“Along the way to our implementation plans we encountered major impacts,” Dr. Bradham said. First was an increase in clinics’ no-show rates due in part to a change in regulation on Immigration and Customs Enforcement. Second was a change in the regulatory environment on clinics themselves: Clinics saw their finances negatively impacted, so they increasingly filled no-show holes with other patients, meaning interviewers couldn’t track patients through a registry in advance. Then there were the storms – Tropical Storm Emily and Hurricanes Harvey, Irma, Jose, and Maria – that caused the cancellation of several scheduled site visits, reducing the study size. In several cases, the fallout from the storms also eliminated our ability to follow up with patients.
Despite setbacks, the study brought to the fore new data on an important topic which Dr. Bradham continues to analyze for trends or outcomes for the upcoming final report.
*Name has been altered to protect the identity of the patient.
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