Beyond Informed Consent: A Social Work Framework for Authentic Shared Decision-Making Across the Cancer Survivorship Continuum
Shared Decision-Making Starts at Diagnosis. So Must the Support System Around It.
Shared decision-making (SDM) is a process where patients, care partners, and clinicians work together to reach care decisions. It depends on open information exchange, trust, and time. All three are in short supply in standard oncology care.
Cancer care partners, meaning family members and friends providing unpaid care, manage medications, coordinate appointments, monitor symptoms, and offer continuous emotional support. An estimated 2.8 million Americans serve in this role annually. They are present at almost every major clinical decision. Yet SDM frameworks rarely center their experiences, and survivorship care plans rarely address their needs.
Patient Empowerment Network (PEN) reaches over 900,000 patients and care partners annually through 700+ resources in 105 languages across 130+ cancer types. PEN program data show that 90% of webinar participants gain the knowledge and confidence to act as informed participants in their care. Yet the care partner beside that patient has no equivalent resource designed for their specific needs.
This poster also addresses a second, underexamined problem: the absence of professional patient advocates, meaning clinically trained individuals who work in the nonprofit, policy, or independent advocacy space, as recognized participants in cancer research and regulatory design. Both problems share the same structural cause. Oncology research frameworks are built around a patient-and-researcher binary that excludes the people in between.
We tell patients their voice matters. Then we design appointments, care plans, and research studies that make it nearly impossible for them to use it. That is not shared decision-making. That is shared information.
Nicole K. Normandin Rueda, LMSW · AACR Scientist↔Survivor Program 2026
Decision-Making Does Not End at Diagnosis. Neither Should the Support.
SDM is not a single conversation at diagnosis. It is an ongoing process that shifts in complexity and intensity across each phase of the cancer journey. Care partners, family members, and professional advocates each play distinct roles at every stage. The framework below traces what that support must look like, phase by phase.
At Diagnosis: Establish the Team Early
This is the highest-stakes SDM moment. Patients are in shock. Care partners are absorbing information the patient may not retain. Social workers can assess family dynamics, identify barriers, and establish care partner roles from day one. Professional advocates can help patients understand what questions to ask and what their rights are. Waiting until treatment is underway means the foundation for SDM is already cracked.
During Treatment: Surface What Clinicians Cannot See
Care partners observe symptom burden, side effect severity, and emotional state between appointments. They hold information that patient-reported outcomes (PROs) sometimes miss. FDA GRASP (Guiding Researchers and Advocates to Scientific Partnerships) confirmed that PRO data show patients experience higher side effects than clinicians document. Care partners observe this gap daily. Yet they have no formal role in surfacing it. SDM frameworks must create that pathway.
At Transition: Deferred Trauma Arrives
Treatment end is often the moment clinical support is withdrawn. It is also when care partner distress peaks. The patient is declared a "survivor." The care partner is simply expected to return to normal. SDM at this phase means including care partners in survivorship care planning, not as an afterthought, but as full participants in decisions about ongoing monitoring, mental health support, and role renegotiation.
Long-Term Survivorship and Bereavement: No Formal Pathway Exists
Care partners in long-term survivorship or bereavement are among the most underserved populations in oncology. No validated oncology-specific burden assessment tools exist for them. Survivorship care plans almost never address their needs. SDM in this phase requires naming the care partner as a person with ongoing needs, not just a support mechanism for someone else's care plan.
Who Does What, and When
Authentic SDM requires a defined support structure, not a passive bystander model. The table below outlines the distinct contributions of each participant across the care continuum.
| Role | SDM Contribution | Gap in Current Practice |
|---|---|---|
| Patient | Articulates values, priorities, and lived experience. Central decision-maker. | Fewer than half report that personal priorities were discussed in treatment consultations. |
| Care Partner / Family | Observes symptom burden between visits. Holds memory, context, and continuity. Provides emotional grounding for decisions. | No formal role in SDM frameworks. Rarely screened for distress. Almost never included in survivorship care plans. |
| Oncology Social Worker | Assesses social determinants of health (SDOH), family dynamics, and barriers. Facilitates values clarification. Connects patients and care partners to resources. | Inconsistently available. Rarely integrated into SDM workflow from diagnosis. Often consulted only at crisis points. |
| Professional Patient Advocate | Translates between patient experience and research or regulatory systems. Carries cross-disease and system-level perspective. Engages earlier in trial design and endpoint selection. | No formal definition or pathway in research or regulatory settings. Often brought in after key decisions are finalized. |
| Clinician / Care Team | Provides clinical expertise and options. Creates conditions for SDM through time, communication, and trust. | Time constraints limit full SDM implementation. PRO data often underrepresent actual symptom burden. |
Four Lenses That Make Care Partners Visible in SDM
Person-in-Environment
Care partner experiences exist within five nested systems: individual, healthcare, family, community, and policy. Caregivers show 23% higher stress hormones, 15% lower antibody response, and elevated cardiovascular risk. Operationalizing person-centered care across these systems requires adaptive leadership from care providers. That means stepping outside the expert role, working across care boundaries, and building organizational cultures that support rather than constrain genuine engagement with patients and families.
Family Caregiver Alliance, 2021; Schulz & Beach, JAMA, 1999:282(23):2215; Kuluski, Reid, & Baker, Health Expect., 2021;24(2):175-181Dyadic Interdependence
Patient and care partner outcomes are linked. A longitudinal study of 158 lung cancer couples found caregiver health problems at baseline predicted elevated distress in both members at 3 and 6 months. SDM research that measures only one member is structurally incomplete.
Mosher CE, et al. Supportive Care in Cancer. 2013;21(8):2295-2302. PMC4428561.Shared Decision-Making (SDM)
Care partners are present at nearly every major clinical decision, yet SDM frameworks rarely center caregiver outcomes. Fewer than half of patients report personal priorities were discussed in treatment consultations. FDA GRASP confirmed that PROs show patients experience higher side effects than clinicians document. Care partners observe this gap daily with no formal role in surfacing it. Co-creation of care, meaning productive relational engagement between patients, care partners, and providers, is independently associated with improved social and physical well-being and satisfaction with care.
Kuijpers et al., Eur J Cancer Care, 2021; Holdsworth et al., MDM Policy Pract., 2020; FDA Project Patient Voice, 2024; Kuipers, Cramm, & Nieboer, BMC Health Serv Res, 2019Trauma-Informed Care (TIC)
All six TIC principles, safety, trustworthiness, peer support, collaboration, patient agency, and cultural sensitivity, apply directly to care partner experience in oncology. Chronic caregiving stress changes how people process information and make decisions. Clinical systems must account for this in SDM design.
Denlinger et al., JNCCN, 2014; Mollica et al., J Cancer Survivorship, 2024Professional Patient Advocates in SDM and Research
A Category That Is Undefined, Unmeasured, and Largely Uninvited
Professional patient advocates are clinically trained individuals who have left institutional healthcare to work in nonprofit, policy, or independent advocacy, by choice, to address system-level gaps from outside. They occupy a distinct position from both patient/survivor advocates and practicing clinicians.
During the 2026 FDA GRASP workshop, program leadership identified this perspective, combining clinical training, care partner experience, and organizational leadership in cancer education, as rare and strategically portable. It is less emotionally constrained than patient narratives, able to speak across cancer types and contexts, and positioned to translate between the language of patients and the language of research and regulation.
FDA program leadership consistently described the same frustration across GRASP sessions: industry brings patient advocates into research design after the major decisions are already made, after trial designs are set, endpoints selected, and PRO instruments chosen. Professional advocates are positioned to engage earlier and more strategically. Yet no formal pathway exists for them to do so.
What Must Change
Research
- Designate care partner outcomes as primary endpoints in oncology trials
- Build longitudinal designs tracking all four survivorship phases
- Validate oncology-specific care partner burden assessment tools
- Study SDM quality from the care partner's perspective, not only the patient's
- Partner with organizations like PEN to leverage existing PRO infrastructure
Clinical Care
- Integrate social work into SDM from the moment of diagnosis
- Include care partners formally in SDM and treatment planning at every stage. The AHRQ SHARE Approach provides a structured model for exactly this kind of evidence-based, patient-centered shared decision-making with families.
- Screen care partners for distress at every oncology visit
- Apply the four IPFCC core principles — respect and dignity, information sharing, participation, and collaboration — explicitly to care partners as their own category of participants
- Address care partner needs explicitly in survivorship care plans
- Treat sleep disturbance and decisional burden as clinical outcomes worth designing around
Policy and FDA
- Create formal pathways for professional advocate participation in pre-submission meetings
- Require trial designs to address whether care partner endpoints were considered
- Publicize the ASCO FDA advocate program to the full advocate community
- Define and fund professional advocate pathways into regulatory engagement
Citation List
- Alfano CM, et al. The American Cancer Society challenge to reduce the burden of cancer survivorship care. CA Cancer J Clin. 2018.
- Agency for Healthcare Research and Quality. The SHARE Approach — Achieving Patient-Centered Care with Shared Decisionmaking: A Brief for Administrators and Practice Leaders. ahrq.gov. Available at https://www.ahrq.gov/health-literacy/professional-training/shared-decision/tool/resource-9.html. Accessed January 17, 2024.
- Bradley CJ, et al. Working, low income, and cancer caregiving: financial and mental health impacts. J Clin Oncol. 2023. Source for 35% stopped working and 30% increased household debt stats.
- Cincidda C, et al. Caregivers' involvement in shared decision-making in oncology: a systematic review. Current Oncology. 2023.
- Decadt I, Laenen A, Celus J, Geyskens S, Vansteenlandt H, Coolbrandt A. Caregiver distress and quality of life in primary caregivers of oncology patients in active treatment and follow-up. Eur J Cancer Care. 2021;30(3):e13399. doi:10.1111/ecc.13399.
- Denlinger CS, et al. Survivorship: introduction and definition. J Natl Compr Canc Netw. 2014.
- Family Caregiver Alliance. Caregiver health. caregiver.org. 2021.
- FDA Center for Drug Evaluation and Research. Project Patient Voice. fda.gov. 2024.
- FDA GRASP Program (Guiding Researchers and Advocates to Scientific Partnerships). Session proceedings. March 2026.
- Ferrell BR, et al. Effect of a family caregiver education intervention on survivorship and support. J Natl Cancer Inst. 2023;115(8):896.
- Holdsworth LM, et al. Patient and caregiver experience with cancer treatment decision making. MDM Policy Pract. 2020.
- Kuijpers W, et al. Shared decision making in oncology outpatient consultations: a systematic review. Eur J Cancer Care. 2021.
- Lee KC, et al. Sleep disturbances and related factors among family caregivers of patients with advanced cancer. Psycho-Oncology. 2015;24(12):1632-8. Source for 72% sleep disturbance stat.
- Miller KD, et al. Cancer treatment and survivorship statistics, 2019. CA Cancer J Clin. 2019.
- Mollica MA, et al. Care partner needs and experiences in cancer survivorship. J Cancer Survivorship. 2024.
- Mollica MA, et al. Patterns of survivorship care planning among cancer survivors. Cancer. 2025.
- Mosher CE, Bakas T, Champion VL. Longitudinal associations between caregiver burden and patient and spouse distress in couples coping with lung cancer. Supportive Care in Cancer. 2013;21(8):2295-2302. PMC4428561.
- Mosher CE, et al. Cancer caregiving and cancer survivorship. Eur J Cancer Care. 2022. Source for 52-94% anxiety/depression stat.
- Patient Empowerment Network. 2024 Program Evaluation Data. powerfulpatients.org. 2024. Source for 90% webinar participant knowledge gain and organizational reach figures.
- Schulz R, Beach SR. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. JAMA. 1999;282(23):2215.
- Sheikh-Wu SF, et al. Oncology nurses' perspectives on survivorship care planning. Can Oncol Nurs J. 2023.
- Sisk BA, et al. Decisional burden among parents of children with cancer. Cancer. 2019;125(8):1365-1372. Source for high decisional burden stat; study of 372 parents within 12 weeks of diagnosis.
Empowerment
Network
PEN reaches 900,000+ cancer patients and care partners annually through evidence-based education, peer support, and advocacy resources across 130+ cancer types in 105 languages.