Patient Population Feedback

By September 2012, OCCAM was ready to test a second version of the patient education workbook with patients and providers. OCCAM was unable to perform another round of Open Call Testing because the September session was for Spanish initiatives only. Therefore, OCCAM needed to resort to a different method for surveying cancer patients and survivors. NCI’s Office of Advocacy Research (OAR) manages the Consumer Advocates in Research and Related Activities (CARRA) program, which is comprised of consumer advocates from across the nation who voluntarily provide assistance to NCI in the development of various projects. These members represent the voice of the cancer community in the roles of survivors, caregivers, and advocates.⁵⁶ With assistance from Shea Buckman Manley OCCAM contacted OAR to acquire a list of cancer advocates to review OCCAM’s draft material. By using OAR’s CARRA advocates,

OCCAM was able to circumvent OMB clearance requirements via the Paperwork Reduction Act.⁵⁴

“Cold call” emails were sent to each of the 13 identified CARRA advocates. Each respondent was asked to review OCCAM’s workbook and consider the following points of consideration:

• How would a resource that encourages you to talk to your healthcare providers about your CAM use be useful to you?

• Based on your experience, do you think this workbook would be helpful to patients?

• Would you recommend this resource to other people?

• Identify the person or persons within the clinical setting who you think would be most likely to refer you to a reference such as this.

• Describe how keeping track of your CAM use through the forms included in this workbook would help you to talk to your doctor about CAM.

• Describe changes you would suggest to make the resource more useful to you.

Each participant was provided with the same feedback tracking form as the healthcare providers to record their answers (Appendix B, Figure 7). Participants were asked to return their responses within two weeks of receipt of the email.

As in the first round of pretesting, the cancer advocates represented a variety of cancer types, including bladder, breast, lung, brain, and leukemia; and females were overrepresented. Of the 13 advocates contacted, 10 responded. No follow-up efforts were made to contact the three advocates who did not respond to the initial email request because of the voluntary nature of their services. Included among the advocates were representatives of several major cancer advocacy groups, including the American Cancer Society, the Leukemia and Lymphoma Society, Friend for Life Cancer Support Network, the National LGBT Cancer Network, and the Oklahoma Brain Tumor Foundation. The only demographic data requested of each participant was an identification of whether they were a caregiver or survivor. Of the people surveyed, three people identified themselves as cancer survivors and seven classified themselves caregivers. No

All 10 participants who reviewed the workbook found it to be useful and would recommend the resource to other people. Several advocates were impressed by the functionality of the workbook, specifically the workbook’s encouragement for patients to organize their thoughts about CAM use and their treatment options. When asked to consider whether OCCAM’s workbook would enhance communication between providers and patients, all participants felt it would strengthen the fragmented lines of communication in oncology care.

Many participants discussed some of the observed patterns of nondisclosure discussed in the literature including a “fear of physician response,” a lack of “physician initiation” of CAM conversations, and a lack of “understanding” about the “impact of CAM on treatments.” Of the participants who recognized the importance of CAM disclosure to healthcare providers, all felt OCCAM’s workbook would empower patients to “feel more comfortable,” and “organize their thoughts” to discuss CAM with their “medical team.”

Participants were asked to identify the healthcare providers who would be most likely to refer patients to this resource. Providers identified included patient navigators, case managers, social workers, nutritionists, nurses, nurse navigators, nurse practitioners (NP) and physician assistants (PA), oncology nurses, and pharmacists. Of the nine people who responded to this particular question, three people believed some physicians might recommend or guide patients to this resource as well. Even though several different types of clinical and ancillary professionals were named, one advocate was convinced she would not receive this type of resource in the clinical environment due to dismissive reactions of her healthcare providers to use of CAM therapies.

Without having been provided a description of the medium for dissemination, two participants emphasized that the workbook should be available in an electronic format, which

would allow for continual updating. To increase the utility of the workbook, several respondents recommended incorporating the workbook, or select pages from the workbook, into the patient record. Integrating the information from the workbook into the medical record would allow all physicians and nurses to access important patient information. Even without incorporation into a patient’s medical records, several participants believed the information captured would still be helpful for healthcare providers because it describes patients’ “overarching view of their whole-body treatment regime.” Finally, one advocate noted the limited availability of CAM information resources for patients. OCCAM’s contribution to the development of patient education resources on CAM serves to “improve understanding” of CAM and emphasizes the necessity of patient-provider conversations about CAM use.