Wednesday, June 4, 1997
"Developing the Role of the Patient Navigator"*

Introduction Debu Tripathy, MD

Dr. Tripathy began the discussion by giving a brief history of the Bay Area Breast Cancer Forum, where the idea to form a patient navigator was developed. He emphasized that he would like to take the energies and thoughts generated during this discussion turned into something concrete. The patient navigator model can vary from one that is highly professional to one that is more of a peer model. The important thing is that no model has come from a brain storming session. He asked for participants to think about the areas that are not well supported by the conventional medical care system and to think about those areas that need extra support. He also asked the room to think about the administrative, professional and training support that would be necessary to develop this type of program.

• Dr. Andrew Kneier thinks the patient navigator should be a "veteran patient" who would act as a guide to a newcomer. She should be detached from bureaucracy, objective, and have the same motivations as the patient for whom she is helping.

• Although everyone agreed that the navigator should be objective, they thought it would be helpful if she had access to the treatment team. The navigator should be on the patient's "side", but have the ability to "cross over" to the treatment side to benefit her patient.

• Dr. Tripathy says that friends often tell him more about the patient, her needs, etc. than the patient herself tells him. This underscores the need for a navigator.

• In defining the role of a patient navigator, participants were not supposed to keep USCF in mind, but rather design a universal model that could be used for patients everywhere.

• The navigator would have additional training to learn the specifics of the hospital in which she was navigating. It is important that the navigator know the procedures of her assigned or chosen facility.

• There would be a spectrum of what the navigator can do which would vary according to the patient's needs.

• The role will change over time. The first level could be to provide emotional support for the patient. The next level would be to educate the patient or to have access and knowledge of the various resources available.

  *This is an attempt to capture the topics and general ideas discussed at the June 4th meeting. Every effort was made to represent the statements and opinions as accurately as possible. Any misrepresentation or omission of the discussion was entirely unintentional.

• Additional roles would be to:

  - Inform and help patients access and translate their pathology reports without giving medical advice

  - Organize appointments and explain the order and time sequence of treatments

  - Help patient get through the bureaucracy

  - Reassure patients that they have time to make decisions

  - Be able to answer questions and debate fine points about treatments and patients' questions

• Many people wanted to make sure the navigator is a person who would seek patients out as opposed to making patients look for her. Most people thought the ideal time to approach a patient would be when she is initially diagnosed.

• Some people thought this could be intrusive and wanted a doctor or nurse to introduce the idea first at the time of the first visit or when a test is ordered. The problem with this is in relying too heavily on the doctors and nurses.

• Another idea is to have an explanation about the patient navigator service enclosed in the papers a new patient receives. The patient would be told that a navigator will contact her unless she would prefer to contact the navigator first. Others felt it was better to have a person tell them about the navigators rather than have patients read about it on paper.

• A network of navigators would need to be built at each hospital or center to familiarize navigators with the structure and "red tape" of each facility. To organize the navigators, there should be a responsible person at each facility and perhaps one overseer for all the facilities.

• There could be different navigators with specialties in different areas. The problem with this is that patients already deal with so many different people, the last thing they need is another layer of people to deal with.

• The possibility of using an already established structure was proposed. The American Cancer Society uses Reach to Recovery as a patient to patient buddy system.

• The navigators could work with already established community information group like the Community Breast Health Project (CBHP) in Palo Alto, the Marin Cancer Institute, the Women's Cancer Resource Center in Berkeley and the Cancer Support Community in San Francisco.

• It could be difficult for a navigator to remain unbiased: By having lots of knowledge, they would have already formed an opinion about what the patient should do.

• Cultural and language barriers could be a big problem. Would there be separate training for different cultures? A recruitment of navigators from cultures that match those of the patients'?
• The time commitment and stress of the position could be overwhelming.

• What if the navigator has a recurrence or gets sick? How would that impact the newly diagnosed patient?

• Adequate training would be difficult - who would train the navigators? How often? How would navigators have access to the newest information? Continuing education could occur at monthly meetings or through written monthly updates.

• There have been similar programs at other hospitals that have been underutilized. This problem would be solved because the patient navigator would be proactive rather than depending on the patient to find this service.

• A navigator may not be able to answer all of the patients' questions. This could also be solved by making sure that the navigator has her own resources and the ability to get answers.

• Using support groups instead of a navigator was suggested. Many insisted, however, that support groups provide for a different need. The navigator is needed in addition to the support group because many of the questions patients have can not be answered in support groups.

• The question of using computers was posed.

  The benefits of using computers are:

  - patients could have access to accurate and updated information

  - it would rely less on the involvement and commitment of other people

  The drawbacks are:

  - computers are too impersonal and can be intimidating

  - many people do not have access or know how to use them

  - it is very difficult to address all levels of knowledge

  - it is almost impossible to account for cultural differences

• Instead, a computer that was available at resource centers and was staffed by a volunteer who could assist and train women how to find information would be great to have in addition to a navigator.

• The patient navigators could develop a tumor board or second opinion conference for patients.

• Navigators could contact doctors from various facilities and organize their meetings. The conference would be anonymous, informal and not affiliated with any medical facility so there would be no liability issues that would prevent doctors from participating.

• The navigator would be responsible for collecting patients' charts, films, slides, etc.