Expert Commentary From Daniel Dohan, PhD – University of California at San Francisco

Program Support

A Word From the Experts
Expert Commentary From Daniel Dohan, PhD – University of California at San Francisco
03/31/2009
[March 2009]

Daniel Dohan, PhD, is an associate professor of health policy and social medicine at the University of California, San Francisco. Dr. Dohan first became interested in patient navigation while researching vulnerable and underserved populations and how cultural factors influence cancer care. His qualitative research was centered in about a dozen clinics in the San Francisco Bay area, which were located in academic centers, safety-net settings, and community-based private practices—a cross-section of locations in which most people receive cancer care in the United States. In the course of studying communications between providers and patients, Dr. Dohan began to observe the work of patient navigators in caring for cancer patients. Because these navigators were engaging the same populations as he was and their goals were closely aligned with his own, he decided to research this innovative program.

At a time when patient navigation had yet to attract substantial national attention, Dr. Dohan co-authored an article with Deborah Schrag, MD, which was published in Cancer in 2005 and titled, “Using Navigators to Improve Care of Underserved Patients: Current Practices and Approaches.” The article concluded that “rigorous studies are needed of the navigator role and program costs and benefits. Such studies will facilitate an assessment of program effectiveness, feasibility across a range of health care settings, and performance relative to alternative approaches for addressing barriers to care among the underserved.”1 We recently had an opportunity to talk with Dr. Dohan, who shared with us his thoughts on the present state of patient navigation and where it might be headed in the future.

The Sustainability of Patient Navigation

Dr. Dohan acknowledged the early work of proponents of patient navigation, such as Dr. Harold Freeman, whose efforts resulted in the establishment of patient navigation programs in a number of institutions across the United States. “The key,” he said, “is to continue evaluating these programs by addressing important questions that will result in ongoing development and sustainability.”

One issue Dr. Dohan discussed was the importance of tailoring patient navigation programs to the needs of a variety of patient populations. For example, some patient navigators work with disadvantaged populations in urban areas where the problem is not the availability of health care facilities but the difficulty of accessing care. Patient navigators also serve rural populations who may experience geographic obstacles to obtaining health care. How are urban-based and rural-based patient navigation programs similar or different, and how does one design a program that meets the needs of both settings?

Another issue Dr. Dohan considers important to the sustainability of navigation programs is determining the best kind of person to have as a navigator. What is the optimal skill level of a navigator? Is it better to have a lay person who knows the population and may be a cancer survivor; someone with a medical background, such as a nurse; or someone with social work or case management experience? “In general,” he said, “it is important to consider where navigation programs work, how they work, and how to measure their effectiveness.”

The Future of Patient Navigation

In the next 3 to 5 years, Dr. Dohan believes that we will have a better sense of whether patient navigation programs are effective in meeting their goals. Fundamental questions are being addressed, such as: Is patient navigation an effective way to decrease disparities and increase access to care? Do patient navigation programs improve patients’ experiences? He pointed to the National Cancer Institute’s (NCI) Patient Navigation Research Program, which was funded in 2005 to develop innovative patient navigation interventions and test their efficacy and cost-effectiveness, as a source of answers to some of these questions. An interim report on the results of the NCI program was published in September 2008.

Dr. Dohan stated that patient navigation has been developed to help underserved, vulnerable patients get through the cancer care system. He believes, however, that in the future patient navigation might extend into a broader patient care arena—both in terms of populations served and disease focus. For example, treatments for cancers and other diseases are increasingly driven by genomic factors that shape how patients process drugs and react to treatment, ushering in an age of personalized medical care. This area is very complex, and the stakes are high in terms of health and illness and the amount of money it takes to develop these technologies. Patient navigation may be influential in helping patients make decisions based on the long-term benefits and risks, including survivorship issues and making sure treatments are used effectively.

Role of Patient Navigation in Clinical Trials

Medically underserved populations are often underrepresented in US clinical trials, resulting in clinical research that does not assess how treatments may affect members of specific populations differently. Dr. Dohan is currently working to increase the diversity of patients in clinical trials through his involvement with the Eliminating Disparities in Clinical Trials (EDICT) Project associated with Baylor College of Medicine in Houston, Texas. Because patient navigators often serve culturally diverse populations, Dr. Dohan sees a tremendous opportunity for them to be involved in the complex process of clinical trial recruitment and enrollment in the future. Such assistance could extend beyond cancer clinical trials to those that research interventions designed to treat other disease states. In fact, one of the policy recommendations of the EDICT Project is to employ patient navigators to meet the special needs of participants in clinical trials. These needs might include language translation, cultural tailoring, or explanations about the trial offered at an appropriate level of health literacy. These needs could be met through personalized education, direction, and support. Clinical trials navigation is a relatively new concept in which its services represent a crucial liaison between investigators, participants, and communities.2

Dr. Dohan envisions patient navigators as instrumental in explaining various aspects of the clinical trial experience—why we do clinical research, how a clinical trial operates, the goals of specific trials and the treatments being studied, and the differences between treatment and research—and helping to ensure that potential participants are making informed decisions. He gave the example of a colleague studying Alzheimer’s disease, noting that enrolling patients who are very ill and disabled with this disease into a clinical trial raises complex ethical issues; he feels navigators might be helpful in this context. For example, patient navigators might help guide family members making decisions for incapacitated patients or provide insights to patient or caregivers into how to decide about research participation when conventional treatments seem to offer little hope of recovery.

Dr. Dohan discussed how patient navigation might play a role in another colleague’s study of genetic precursors of epilepsy. Because the clinical issues being studied are so complex, patient navigators might be helpful in explaining to potential participants why the research is being done, why only certain families are being asked to participate, and how society might benefit from the findings. Thus, the role of patient navigators in this case might be to facilitate an understanding of what is involved in the trial, in order to help children and their parents decide whether to participate.

Interestingly, Dr. Dohan noted, patient navigators have questioned taking a role in clinical trial recruitment. He said that patient navigators feel good about getting patients care that they might not otherwise have access to; however, some are hesitant to be involved in recruiting for clinical trials. In research focus groups and interviews, some patient navigators expressed a desire to stay focused on the task of making sure vulnerable patients get needed treatment rather than adopting a broader mandate of advancing clinical research. Because patient navigators potentially may play a crucial role in clinical research, their reluctance to be involved is important to understand and address.

Patient Navigation in a Reformed Health Care System

Health reform is an important topic being explored by the current Presidential administration. Dr. Dohan believes it is important to consider what the role of patient navigation might be in such a health system. Where does patient navigation fall in that arena? Will patient navigation make the health care system more accessible for patients? How much will patient navigation cost, how much are we willing to pay for it, and how are we going to pay for it? These are all questions that will need to be explored in the future.

In conclusion

Dr. Dohan is still very much involved in patient navigation. In addition to his association with the EDICT Project, he is helping to institute a new navigation program at the Comprehensive Cancer Center of the University of San Francisco by considering the best design for such a program and ways to collect data to evaluate its effectiveness.

Dr. Dohan also expressed excitement about his involvement in a program that, when funded, will originate out of the San Francisco State University School of Social Work. “The project,” he said, “aims to bring social work trainees into the cancer center and train them to act as navigators for cancer patients.” The goal is to create a model for encouraging dynamic people enrolled in a social work program to become involved in cancer care. “Perhaps in the future,” he said, “they will become the nucleus of a new professional group of navigators.”

References:

  1. Dohan D, Schrag D. Using navigators to improve care of underserved patients: current practices and approaches. Cancer. 2005;104:848-855.
  2. The EDICT Project: policy recommendations to eliminate disparities in clinical trials. Baylor College of Medicine Web site. http://www.bcm.edu/edict/PDF/EDICT_Project_Booklet.pdf. Accessed March 3, 2009.