What is Patient Outreach?
In general, patient outreach includes extending patient services or assistance beyond current or usual limits, providing services to a population that might not otherwise have access to these services, and meeting those in need of services in their current location. However, according to Dr Weddle, many oncology pharmacists view their role in this aspect of care as primarily helping patients navigate drug costs or obtain necessary medications. Therefore, she encourages pharmacists to “think beyond co-pay assistance” when it comes to providing outreach services.
Outreach should include raising patient or caregiver awareness of local support meetings and webinars, and providing tools and resources (eg, hotlines, survivorship/caregiver website links) that patients, caregivers, and other pharmacists may find useful. Additional strategies that pharmacists can explore to expand their scope of involvement include engaging in local, statewide, and nationwide communities, and navigating the unmet needs of patients.
“You don’t know what you need to create if you don’t know what the needs of your patients are,” Dr Weddle noted.
Addressing Blind Spots in Education
There may be instances in which healthcare providers do not refer patients to a cancer support resource because they do not understand exactly what services are being provided, or they are not certain that the resource would be helpful. There may even be barriers to promoting something as seemingly straightforward as exercise.
Although most providers agree that exercise counseling should be a component of standard healthcare, many are not knowledgeable about specific guidelines pertaining to exercise in patients with cancer, or they may have questions regarding how and when to refer patients to a particular program. Fortunately, as Dr Weddle pointed out, organizations are making efforts to identify and address these blind spots in education.
A clinical trial addressed unmet needs in health disparities among cancer survivors, emphasizing the need for increased efforts in wellness promotion for survivors as well as caregivers; the results of this trial were recently published in The New England Journal of Medicine.1 In 2016, The Journal of Oncology Practice published the American Society of Clinical Oncology Core Curriculum for Cancer Survivorship Education, which highlights the importance of survivors and the financial burdens of caregivers.2
“Caregivers are going through the same emotional, physical, and financial stress as the individuals that they’re taking care of,” Dr Weddle noted.
In 2017, the Cancer Support Community compiled a Cancer Experience Registry with input from >12,000 patients and caregivers.3 Key findings from this survey revealed that 53% of patients were worried about the future; 73% did not discuss the costs of care with their healthcare team; and the vast majority (93%) of patients rated quality of life as a very important factor when weighing treatment choices. Results also indicated that only 52% of patients said that they received guidance on long-term adverse effects associated with treatment, and 1 in 5 reported that their healthcare team did not explain short-term adverse effects to them. In addition, 77% of respondents believed that insurance would not cover the costs associated with clinical trial participation.
Creating a Patient Outreach Committee
Dr Weddle explained that HOPA has created a patient outreach committee to address unmet needs related to support services for patients with cancer. This committee has designed benchmarks based on the 4 strategic goal areas outlined by HOPA (professional development; professional resources and tools; research; and advocacy), and has dedicated efforts toward reaching these benchmarks by the end of 2020.
In the area of professional development, the committee aims to establish 3 new collaborations with patient advocacy organizations between 2018 and 2020.
“We are making strides in that area as far as introducing HOPA to other patient outreach groups, seeing how we can contribute to their organizations, and how their organizations can contribute to our membership,” Dr Weddle said.
To improve access to professional resources and tools, there are plans to create patient and caregiver-related information on the HOPA website, and to develop tools highlighting the value of the oncology pharmacist/patient relationship. In the area of research, the committee has set out to create 3 research-focused projects in collaboration with patient advocacy organizations. Finally, in the realm of advocacy, there are plans to create resources for 3 public awareness campaigns.
According to Dr Weddle, continuing to uncover these types of unmet needs in the community will advance HOPA’s Patient Outreach Committee in their mission to develop high-quality resources and tools, and will put them in a prime position to foster mutually beneficial and long-lasting partnerships.
References
- Shapiro CL. Cancer survivorship. N Engl J Med. 2018;379:2438-2450.
- Shapiro CL, Jacobsen PB, Henderson T, et al. ReCAP: ASCO Core Curriculum for Cancer Survivorship Education. J Oncol Pract. 2016;12:145, e108-e117.
- Cancer Support Community. Insight into the patient experience: cancer experience registry report 2017. www.cancersupportcommunity.org/sites/default/files/uploads/our-research/2017_Report/registry_report_final.pdf. Accessed April 19, 2019.