Cancer Action Council (CAC) Research Priorities and Questions

Conner Creek CAC

Cancer patient navigation: Cancer patient navigators need to offer a different perspective from the doctor (a more holistic view) and help interpret medical information

Does patient navigation and the distribution of different educational materials (books, videos, brochures) help change outcomes of patient nutrition?
Can we obtain more data on interventions to introduce better eating habits through navigation (e.g., types of fruits and vegetables with nutritional value) for patients?
How are navigators evaluated and how can navigation be adapted to get outcomes for improvement?
What makes a good navigator (e.g., empathy versus sympathy)?

Cancer caregiving

Gender and men’s involvement in partner’s care

What kind of resources can we provide to men to make them more educated and engaged?
Can we give men role models to learn to be more engaged?
Can we address men’s engagement by providing them with effective ways to support their significant others?
What strategies can be used to engage men in the treatment of their significant others?
To what extent does a man’s anxiety impede the support they give to their spouse/partner?

Caregiver preparation & education: Caregivers need more preparation and education in order to help interpret medical information/procedures

What is the best way to prepare and educate cancer caregivers?

Caregiver isolation/support

How are caregivers involved in treatment decisions? What are the positive and negative aspects of caregiver involvement, extent of their involvement, and what is the ability of patient to make decisions versus the caregiver?
What is the power of prayer and how does it help give the caregiver hope (e.g., space to pray on their own as a solo activity from caregiving)?

Cancer patients’ psychological well-being

Patients have difficulty coping with treatment
How would more information at the onset of treatment reduce anxiety and improve coping with treatment?
Would providing 6-week reviews of treatment progress improve outcomes?
Is a patient navigator who services no more than 10 patients at a time better for outcomes?
What strategies can help cancer patients cope with the difficulties of cancer treatment?
How do men cope differently with cancer treatment than women? Are there different communication needs? Do they seek resources and information in different ways?*
How can we help cancer patients cope with the mental/physical and spiritual difficulties associated with cancer treatments?

Cancer patients are often socially isolated

What should or can cancer patients do to avoid isolation?
How can we teach hospital staff/social workers to identify people who are isolated?
What influence does a strong faith have on reducing social isolation?
Does spirituality have an impact on social isolation?
How does a cancer diagnosis lead to social isolation? What causes or contributes to the social isolation of cancer patients?

Western Wayne CAC

Financial Burden
- Does availability/affordability of transportation and parking affect decisions about treatment location and treatment outcomes?
- What transportation-related resources are available at a given setting and can additional resources affect outcomes?
- Are there differences in patient engagement between facilities where free parking is available and those where it is not?
Familial and genetic cancer risk

How to share genetic information

What kinds of strategies can we use to encourage people to share their personal health histories with family members?
What kinds of formats/templates/organizational strategies work best for collecting family health histories?
What resources can help family members share information with each other to build a family health history?
Who should hold or maintain family health history?
How can the most up-to-date and accurate family health histories be shared with healthcare providers and be made a part of the medical record?
How do we increase individual and community awareness/knowledge of genetic counseling and testing for cancer risk?
Is fear a barrier to undergoing genetic testing and learning test results that might be related to increased cancer risk? How does fear affect decisions about undergoing genetic testing?

Delays in cancer care
- How can delays in care be addressed?

Can healthcare systems-focused interventions increase accessibility (e.g., walk-in appointments, extended hours)?
Do differences in the range of patient needs affect patient engagement and outcomes? Can we expand the range of needs that navigation addresses?
What kinds of navigation provides better support during diagnosis?
Are video or internet-based navigation models as effective as standard?

LGBTQ CAC

Cancer and comorbidities

What factors contribute to HIV exclusions in cancer clinical trials? Are these discriminatory or is there a valid medical basis?
Why is cancer risk higher in people living with HIV/AIDS?
What are the cancer care experiences of people living with HIV?
Do people living with HIV experience different issues around quality of life during treatment?

Cancer caregiving

What are the patient caregiving needs for LGBTQ cancer patients/survivors?
What factors contribute to a lack of caregivers in LGBTQ community?
How do the changing dynamics in a relationship (patient/caregiver) affect that relationship?
How does legal recognition of relationship (e.g. marriage equality or lack thereof) impact the patient/caregiver relationship?
What are the unique supportive needs for LGBTQ caregivers?
How does lack of disclosure of relationship impact caregiver stress?
What impact does repeatedly coming out in healthcare settings have on the patient and on the caregiver?
How would a caregiver or caregiving support or education program be tailored for LGBTQ caregivers?

Psychological well-being among LGBTQ cancer patients

How does the fear of discrimination impact LGBTQ people getting cancer screenings on schedule?
How can healthcare professionals be better trained to come out as allies?
How do community members recognize allies in healthcare settings (i.e. how do people know it is safe to come out)?
What oncologist behaviors or practices help LGBTQ people feel more comfortable? What do people need in healthcare settings to feel comfortable coming out?
What oncologist behaviors contribute to patient fear, concerns about discrimination, etc.?
What are the impacts of LGBTQ-specific advocacy (patient & provider) on patient care?
What are people most fearful of when seeking care in terms of discrimination? What are they actually afraid will happen?
What is the impact of marginalization and discrimination on treatment outcomes?
How does discrimination or fear of discrimination impact patient decision-making?
How does eliminating barriers to LGBTQ access, retention, and completion of cancer prevention and care impact patient care?
How does altering the health care environment (e.g., adding SO/GI questions to intake forms and EHR, provide gender neutral bathrooms) affect the experience of care?

ACCESS/Dearborn CAC

Barriers to receiving care and access to care

How can we better train translators or navigators to help with language barriers?
How can the use of various dialects by translators for each ethnic group improve patient care and outcomes?
How does translation of materials in specific dialect effect patient overall care including confidence in care?
How can we better inform patients about their insurance options?
How can support strategies for cooperation between hospital and insurance companies?

Survivorship/ recurrence

How can we help patients cope with recurrence?
What types of resources are available to help patients cope with recurrence?
How can we educate patients about treatment for cancer recurrence?
Do we need a patient navigation strategy for cancer recurrence?
How can we engage survivors with supportive services (e.g., support groups)?
How can we bring survivors together for special activities?
How can we support home and neighborhood environments that are supposed to be supportive to survivors?
How do support groups help cancer patients and their families through survivorship?

Health, wellness, and lifestyle

What are the mental and physical benefits of doing physical activities during and after cancer treatment?
How can Arab women address physical activity that is acceptable to their community and culture?
What type of alternatives do Arab women have to stay physically active?

Oakland County CAC

Cancer screening

How do we increase or improve access to cancer screening in underserved communities?
What strategies are needed to improve access to cancer screening?
What role does social media play to educate the community to improve cancer screening?

Technology

How can providers increase trust among seniors to use technology for health information and education?
How can care providers increase use of patient portals for health information?

Genetic risk communication with families/social networks

Why are discussions of medical history so secretive among families?
Why don’t people discuss cancer?
How do you best facilitate the sharing of genetic information?
Who should share and hold the information within a family?
What are the best ways to educate lay people/community members about basic genetic information?

Macomb County CAC

Evaluating healthcare systems and providers

How can newly diagnosed patients best use patient feedback data to help with outcomes and treatment experiences?
How can patient access to doctor/health system rankings improve patient decision making?

Cancer communication/education

What are the best communication methods (e.g. PSA, newsletter, flyers, etc.) to get cancer information out to the public?
Where does a cancer patient find the most reliable information about cancer treatment?

Patient navigation

How does patient navigation improve patient outcomes?
How are navigators trained to support all cancer patient’s needs?
Are navigators trained to assist/support patients through: insurance matters; financial issues; emotional component?
What types of navigation are most effective for newly diagnosed cancer patients?

Genesee County CAC

Insurance/financial toxicity

Can more cost-effective health plans led to better outcomes for patients?

Post-treatment survivorship

How can the patient navigate post –treatment resources to improve long term health outcomes?
How can patient partnerships with hospital and health care systems address resource gaps?
Do cancer patients who work with cancer navigators have better outcomes than those who navigate the system on their own?

Doctor-patient communication

What types of provider interventions are most effective in improving doctor-patient relationship?
Does the length of time a doctor spends with patients lead to better patient outcomes?
Do patient advocate programs (attending MD appointments with patients) improve outcomes (patient satisfaction, patient adherence to treatment, etc.)?
How can patients develop skills to help them better understand cancer information and other instructions?
Does a patient asking questions about their care impact doctor-patient relationships?
How does a patient navigate the healthcare system when their doctor is not available?

Black Men’s CAC

Cancer information

How can Black men be incentivized to get and stay involved in cancer prevention and control efforts?
How frequently should cancer information be shared with patients and communities in order to effectively change attitudes and behaviors?
How does one manage comorbidities along with a cancer diagnosis?
How can community be educated on all phases of clinical trials?
How can fraternities be engaged in sharing cancer information?
Who should share cancer information to effectively change attitudes and behaviors (providers, peers, etc.)?
How do we engage the faith community in sharing cancer information?
How do Black men evaluate the validity of expert information?
What sources of expert do Black men trust?
How can grassroots community members be engaged in sharing cancer information?
How can the community be supported wirelessly (e.g., digital/internet access) in terms of cancer information?
How can Black medical experts be engaged in dialogue with Black men in barbershop settings?
How can respected and trusted community leaders be reached and their advice and assistance requested regarding engaging their community members?
How can barbershops be supported as effective places to disseminate information?
How can cancer information be shared across multiple mediums (posters, flyers, etc.)?
What are the research barriers to educating Black men on prevention and alternative cancer care and roles of lifestyle?

Financial toxicity of cancer care

What role do treatment options play in patient decision making around treatment and care?
How do people gain equal access to cost of cancer care information?
How and where does cost of cancer care information sharing occur?
Where do Black men get information about health care costs?
How and through what channels do Black men obtain information?
How are the costs of treatment option shared with Black men?
How can we inform the community about financial supports and resources for cancer care?
Who should get the cost of cancer care information to the community?
What are the racial differences in how cost of cancer care information is shared?
Do Black men have the same access to healthcare costs information?
How can medical institutions be encouraged to advance understanding alternative/holistic needs in cancer care?
How do decisions by insurance providers impact financial concerns and treatment options?

Medical trust/mistrust

How do patients know if doctors are telling the truth?
What is the role of behavioral expectations in the perception of trust and mistrust (physician and patient)?
What are the factors that destroy and build trust?
How can physicians earn trust?
How can community be educated to build medical trust?
What role does cultural competency play in patient-physician engagement and trust?
Are there generational differences in mistrust and concerns?
How does physician and patient engagement and interaction influence mistrust and trust?

Young Survivors

Health Literacy

What percentage of AYA patients feel they have access to information relevant to their diagnosis?
What education topics are most relevant for young survivors in survivorship?
How should survivorship planning differ for younger vs older survivors?
How can we better deliver cancer information to the AYA population?
How can we tailor messages about health literacy for the AYA population?
How do patients comprehend what provider is saying?

Social support

Emotional support

Do emotionally supported people have better emotional outcomes than people who lack support?
Do patients who have more emotional support during treatment feel more optimistic going forward after treatment?
What role does social support play in improving cancer patients’ QOL?
What do you need to hear from me to know that you have my unconditional support?
What type of resources are needed to improve one’s emotional state if they lack support?
What is the right thing to say [to a cancer survivor] based on the person’s personality type [and the stage of their cancer experience]?

Support groups

How does the timing of the interactions with other cancer survivors affect the journey of a newly diagnosed patient?
What is the difference, connecting with other survivors in person or virtual?
How as a cancer patient can one view the world as if they never had cancer? Can you change your perspective of your experience?
How do cancer patients seek out co-survivors or cancer support organizations after initial diagnosis? (social media, google)
Can one overcome the memory of their cancer treatment?
Why do some people want to share their story or advocate vs people who do want to keep their diagnosis private?
When is it okay to stop and take care of themselves vs advocating for others?
How do cancer survivors learn about different organizations?

Fertility Preservation

Why are oncologists not talking to younger persons about fertility preservation before treatment?
What percentage of oncologists are talking about fertility [options] with young adult patients?
What percentage of people actually preserve fertility prior to starting treatment? Of those who did, what did the process look like? If they didn’t, why not?
How many oncologists refer patients to fertility specialists?
What percentage of people start fertility preservation prior to the start of treatment?
Does type and/or stage of cancer diagnosis (and resulting treatment) affect the fertility preservation process?