Healthcare Getting It Right : Patient-centered cancer care

Patient-centered care continues to transform cancer care. Approaches include patients, family and community to help steer direction. Attention to this important perspective will continue to shape best practice and best health quality of life.

Global health encourages patient-centered cancer care delivery. Assessing the needs of those affected by cancer through the new WHO global survey [1] is really, really cool.

o The involvement of cancer organizations and country distribution would be helpful to understand.

o Supplementing this survey with WHO inclusion of country patient-centered outcome work would be very supportive. It does matter if cancer patients from one country are familiar with initiatives such as PCORI [2], while patients from another country may or may not have similar resources.

o Supplementing the WHO survey with country patient advocacy groups, as well as research support organizations, would be beneficial. The American Cancer Society’s inclusion and efforts for patients may or may not be modeled elsewhere. Simultaneously, there appears to be no measure or scoring system for volume and scope of patient advocacy organizations by country. Definitions of support, care coordination, patient navigation and translator services, caregiver relief, transportation and other support could be clear. Readability and access to internet resources could also be scored. The contrast between a family member or caregiver who accesses the NCI website [3] and those without internet access should be clear.

o Supporting global health patient-centered cancer care could include a WHO metric on healthcare cancer networks. Research networks, such as the National Cancer Institute, could be included, and patient-centered work in these networks could also be scored.

o Cancer registry and surveillance support could undergo a formal global health scoring system. Additionally, best practices for patient data submission could be assessed in surveys [4]. The more surveys a patient has to handle, the more unlikely a timely response. Why not just ask how they want to submit follow up data?

o Implementation of a country’s national cancer plans should be organized and scored. It is not enough to ask whether or not a country has a national cancer plan [5], though even that question would support the patient-centered assessment.

o The definitions of outcomes could include patient-centered outcomes, so that policy analysis can appropriately address quality of life alongside medicine’s traditional [6] outcomes.

Recent global health focus on the participation and experience of people living with NCDs (PLWNCDs) is helpful [7] toward cancer care improvement.

o The report by WHO is clear and broad, and it flexes on a future guided by PLWNCDs. This is smart, and it would equally smart to have the report appropriately written for the layperson. Average reading levels should be respected right from the start of PLWNCD initiatives.

o Culture of health practices, indigenous communities and marginalized and disenfranchised communities will undoubtedly receive focus. This is excellent. Efficient inclusion could see medical research and intellectual property components. Additionally, definitions and interpretations of medical components to cancer terminology should be very clear.

o A roadmap to PLWNCD leadership in patient-centered medicine must include a pathway to clinician diplomacy. At the end of the day, cancer, oncology, internal medicine and specialties require trained medical expertise to guide best medicine. Pathways to resolve patient and physician priority differences should include time and resources for open dialogue, and should have a footpath to follow.

o Representation in the cancer journey must be heard by industry (pharmaceutical, biomedicine and healthcare delivery). Policy and practice could be accompanied by gap analysis.

National work toward patient-centered cancer care is outstanding. To support this author’s personal belief that it is unmatched, examining US efforts and opportunities toward objective international comparison would be helpful. Additionally, objective comparison encourages collegial international improvement. Questions the United States can seek to respond to, in public spotlight with plain language, may include:

How has US leadership supported international cancer registry, surveillance and research work?
How has US patient-centered outcome research and patient-centered care coordination led alongside international peers?
Have financial setbacks, personal debt and suboptimal financial policies related to cancer expenses held US back from best practice leadership? If so, what have been the consequences and what are the recommendations?
How have non-traditional cancer components been overlooked? Inclusion of environmental components in basic health assessments, specialty medicine access or insurance assessments are ripe opportunities for medicine. Additionally, how have non-traditional medical components been incorporated into national cancer plans [8]?

o Specifically, where is the gap analyses between what individuals and communities are asking for, and what the US is responding to? These are not just EPA, water and sanitation and industrial issues. They are medical issues, and they are patient-centered care issues. They are issues in which we are expected to walk the walk.

US military and veteran [9,10] cancer care advances are outstanding.

When research indicate outcomes differences between civilian and military cancer care [11], questions should be anticipated. Questions on comparison accuracy, standardization and which agencies are tasked for analyses and improvement strategies across the civilian-military spectrum should be met with response.
How comparative outcome research incorporates health quality of life outcomes could be better organized.
The civilian-military partnership with cancer care improvement could be selected as a model use for other disease or specialty issue. Even if another model proves more effective, CQI could lead the way.
The responsible parties for tracking cancer care reimbursement payout by contracted civilian and military provider, or by contracted and military pharmacy plan, should create transparent reports.
Civilian physician and civilian health practitioner community preparedness should be clear. Who is responsible for gap analyses and follow through, and which responsibilities are led by major physician and hospital associations, should be clear. With continued contracting and collaboration.
Cancer-related medical debt, billing and co-pay differences between civilians and military members should be highlighted. The charitable and tax write-off comparisons between civilian, military and veteran cancer healthcare matter, and how is this leaned upon with federal and state budgets matters. Hospital and health management association leadership should be tasked with responsibilities to this issue.
How the NCI incorporates DoD and VA cancer research into national strategic plans around cancer should be understood. Alignment in major improvement initiatives, such as with disparity research and intervention [12], drives us forward further.

Cancer care resource need discrepancies and social service discrepancies between veterans and civilians should be clear. This includes a gap analysis that details charity organization work around cancer care and resource support (transportation, coordination, navigation) compared to reimbursed social service in healthcare.

Deployment and caregiving must be central to patient-centered care.

Caregiving and household definitions for active duty and reservists should be standard.
How deployment factors into cancer caregiving considerations is not mentioned in most cancer care reporting. There should be no laissez-faire indifference, nor disorganization, to deployment with cancer caregiving data, interventions and best practices.
Civilian healthcare must adapt deployment and caregiving considerations as a match to military cancer care. The longer civilian healthcare relies on connections to someone in military programs who can help, the longer the disorganization allows for inappropriate hot potato games with civilian healthcare responsibilities.
The main concerns and request denials experienced by active duty, reservist and veterans related to cancer or caregiving for cancer-related healthcare should be known. The interventions in place to address these concerns and denials, and how is improvement measured, should also be a measured expectation.

The question of how the military’s work with cancer diagnostics and treatments [13] translates to affordable medication for the tax-payer down the line should be asked again and again, until the public understands the very clear and simple path.