Many healthcare professionals have a “blind spot” about cancer support services, according to Kellie Jones Weddle, PharmD, BCOP, FCCP, FHOPA, Clinical Professor, Pharmacy Practice, Purdue University College of Pharmacy, Indianapolis, IN.
This is prevalent among hematology oncology pharmacists and in oncology in general, Dr Weddle said at the 2019 Hematology/Oncology Pharmacy Association (HOPA) Annual Meeting. She discussed the importance of identifying unmet needs among providers and patients and delivering effective patient outreach services to fill in some of these gaps, and described the HOPA Patient Outreach Committee that is focused on developing resources and tools for pharmacists.
What Is Patient Outreach?
Patient outreach is generally defined as extending patient services or assistance beyond current or usual limits by providing services to a patient population that may not otherwise have access to those services, or by meeting those in need of services in their current location. But patient outreach for oncology pharmacists is more specific.
“When I started talking to other pharmacists, I heard varying ideas of what patient outreach really means,” Dr Weddle said. She noted that pharmacists often think that patient outreach relates solely to drug costs and obtaining medications for patients, but she encourages them to “think beyond copay assistance.”
Outreach should include providing education beyond drug information (ie, making patients and caregivers aware of local support meetings and webinars), and providing tools and resources to patients, caregivers, and other pharmacists (eg, hotlines, survivorship/caregiver links). She also encourages expanding pharmacists’ scope of involvement by 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,” she said.
Addressing the Blind Spots
Even when oncology providers are aware of cancer support services, they often don’t recommend them to patients, either because they do not understand what these services provide, or they do not believe these services would be helpful. Even something as seemingly straightforward as exercise promotion for patients is often met by barriers.
Although the majority of providers agree that exercise counseling should be part of standard patient care, many are also unaware of current exercise guidelines in cancer or self-report poor knowledge on when, how, and which patients to refer to an exercise program.
The good news, Dr Weddle said, is that many organizations, including HOPA, are making efforts to identify and address these blind spots in medical education.
She described a 2018 article published in the New England Journal of Medicine that highlighted the unmet needs and health disparities among cancer survivors, emphasizing the need for increased efforts in wellness promotion for cancer survivors and for caregivers.1
In 2016, the American Society of Clinical Oncology issued a core curriculum for cancer survivorship education, highlighting the importance of survivor education and the emotional and financial burden on caregivers.2
“Caregivers are going through the same emotional, physical, and financial stress as the individuals that they’re taking care of,” Dr Weddle emphasized.
In 2017, the Cancer Support Community compiled a Cancer Experience Registry, with input from more than 12,000 individuals, including survivors, patients, and caregivers in relation to more than 45 different cancer types.3 Key findings from the survey revealed that >50% of respondents were worried about the future, and 73% did not talk about costs of care with their care team.3
In addition, the vast majority (93%) of survey respondents rated quality of life as a very important factor when weighing treatment options, but only 52% received guidance on long-term side effects of their treatment, and 1 in 5 did not receive information on short-term side effects. Furthermore, 77% of the respondents believed that health insurance would not cover the cost of clinical trial participation.3 Dr Weddle said she found some of these findings “appalling,” in terms of unmet needs of patients and survivors.
HOPA’s Patient Outreach Committee
To address these unmet needs, Dr Weddle said, HOPA created a Patient Outreach Committee, of which she is a member. The committee designed benchmarks based on the 4 strategic goal areas outlined by HOPA—professional development, professional resources and tools, research, and advocacy—and have dedicated this effort toward reaching these benchmarks by the end of 2020.
In the area of professional development, the committee has as a goal establishing 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.
In the area of research, the committee has set out to create 3 research-focused projects in collaboration with patient advocacy organizations. Through these projects, the committee members hope to further demonstrate the value of the hematology oncology pharmacists. They also plan to create patient- and caregiver-related information on the HOPA website, and to develop tools highlighting the value of the oncology pharmacist–patient relationship. Finally, in the realm of advocacy, they aim to create resources for 3 public awareness campaigns.
Continuing to uncover these types of unmet needs in the community will inform 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, she concluded.
- 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.