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Improving Cancer Control in Rural Communities

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I am delighted to start this discussion on R2R!

Last week I was invited to participate in NCl’s Cancer Currents blog to discuss some of the issues faced by rural communities and how NCI is approaching this important problem.  You may know that researchers from several NCI-Designated Cancer Centers and NCI Community Oncology Research Program (NCORP) sites that serve rural parts of the United States recently met with NCI leaders to discuss the disparities in cancer outcomes in many rural areas of the country. The meeting was part of NCI’s efforts to prioritize its research activities to improve cancer control in rural areas. 

How does living in a rural area affect issues like cancer prevention, treatment, and survivorship care?

It’s clear that there is a lot of geographic variation in cancer risk factors, incidence, and mortality. People who live in rural areas often face significant health care access challenges, including fewer physicians, long distances to facilities, and limited transportation options. In some rural areas, we also see high rates of tobacco use, poverty, poor health literacy, and drug and alcohol abuse.

All of these challenges can contribute to higher incidence of certain cancers in rural areas, and worse outcomes.

For example, in the Appalachian region of Ohio—where access to primary care, let alone oncology care, is limited, and you have high rates of poverty and obesity, among other problems—the incidence rates of colorectal, lung, and cervical cancers are substantially higher than they are in wealthier and more populated areas of the state. Similar types of geographic disparities are commonly seen in states like Utah, Montana, and Kansas.

So it’s clear that where a person lives has an important influence on their health through a variety of mechanisms.

So living in a rural part of the country should be part of the health disparities conversation?

I think it’s clear that when we talk about health disparities, the geographic variation in cancer outcomes, as well as the diverse populations within rural areas, should be included in that discussion.

In many regions of the United States, for instance, you can’t talk about rural cancer control without addressing the cancer disparities seen in American Indian populations. These populations have specific needs and issues, and they can be especially challenging. We’re very mindful of that, and we want to ensure that as we strengthen our efforts in rural cancer control the needs of American Indians are front and center.

Is there a growing recognition of the disparities in cancer outcomes in rural areas of the United States?

The disparities are not new, but there is definitely more cross talk among the scientific disciplines that touch on issues related to geography and health.

From a research perspective, the problem is complex and large in scope. So the main challenge facing NCI is identifying where, as a research agency, we can have the biggest impact in addressing this significant problem.

A number of federal agencies and state and local health departments have key roles as well, and we recognize that the nonprofit sector has played an essential role for many years. What we’re trying to do is engage local investigators and community leaders to get a better sense of where problems exist and where additional evidence is needed to inform action at the local level.

Are there examples of cancer control success stories in rural areas that could serve as a model for other areas to follow?

There are a number of success stories. One good example is telehealth, which can facilitate health care in all kinds in communities and is being actively used by several cancer centers for everything from cancer screening to survivorship care.

 

A rate-limiting step of telehealth, however, is a lack of access to broadband internet in many parts of the country. That’s been discussed this year by the President’s Cancer Panel, and I would guess that the panel’s next report will address some of those issues.

 

Another federal agency with a key role in rural cancer control is the Federal Communications Commission. It has a program called Universal Service that supports expanding access to communication services across the country, including broadband services. Dissemination of and access to the communication technology infrastructure clearly is a key to improving rural cancer control and public health.

Broadband access and affordability aren’t NCI’s responsibilities, of course, but we can support research on how to use these technologies to promote improved cancer prevention and care.

Are there opportunities in rural cancer control where you think NCI can play a prominent role?

 

There are several. One is supporting implementation science. This includes research that demonstrates how to effectively incorporate proven cancer control interventions in a coordinated way into broader health programs that are designed to reach rural populations. In this way, we can take advantage of the infrastructure that’s been developed for primary care or other health domains.

We’re also very interested in learning how we can work more with NCI-Designated Cancer Centers and NCORP sites to build on their experiences with community outreach and developing partnerships with local organizations.

Over the last several years, we haven’t made as much progress in building up the kind of research portfolio in rural health and rural cancer control as we would like. The same areas that lack health care access tend to also lack a real research infrastructure, so we’re especially interested in learning from those investigators who have been able to conduct cancer research successfully in these really challenging environments.

Is studying cancer control in rural areas different from biomedical research? Do you often need “boots on the ground,” so to speak?

Yes. For years, we’ve been hearing from many investigators about the importance of involving members of the community in the conduct of research projects.

Another issue is incentivizing our research community to invest the time and effort into the trust building that is required to do this type of research. It can take many years, in some cases, to build relationships with local communities, especially those with low health literacy or a good bit of mistrust of the medical and science communities.

NCI’s Community Networks Program Centers have supported this kind of work in many parts of the country, but there still are a lot of people we haven’t reached.

What are NCI’s top priorities when it comes to improving rural cancer control?

One thing that’s clear is that there’s no one-size-fits-all solution. We’re looking to develop research initiatives that allow local customization and adaptation. We’re also especially interested in developing research activities that can facilitate programs that are sustainable and can be expanded and scaled up to have a bigger downstream effect on population health.

A good example is some of the success we’ve seen with state and community tobacco control initiatives. While many initiatives aren’t focused specifically on rural populations, they provide good examples of how we can partner with local organizations to increase the sustainable impact of NCI-funded research.

Another highly relevant effort in this regard is the addition of cancer care delivery research to NCORP, which will allow us to have a broader perspective on understanding the many ways that people “fall through the cracks” across the whole cancer control continuum.

The Comprehensive Cancer Control National Partnership includes many of the key players addressing these challenging issues. NCI wants to engage more academic investigators to collaborate with these community partners to develop more effective cancer control strategies. State and local policy makers need actionable, relevant evidence to guide their decision making on cancer control efforts in their communities. For them, a peer-reviewed journal publication is only the first step, not the last.


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Building out from these great

Building out from these great dicsussion points, i gave the opening address at NAACCR yeesterday here in St Louis. It was 11 years since Dr Koh and i addressed the need for imrpoving colorecatl cancer screening. Yesterday I  emphasized the protential to speed cancer prevention and move beyond our current situation, I noted:

We are not implementing proven cancer prevention and screening interventions.

 

Instead we allow millions of people to develop and die from highly preventable forms of cancer.  

 

By not implementing these interventions in ways that reach populations with greatest need, we are permitting disparities to persist.

 

Cancer registries offer an important resource to close the loop on the outcomes of our implementation science studies - particularly as we move beyond studies based in our from academic medical centers and consider outcomes for our rural and other underserved populations. 

I concluded my presentation calling for cancer registries to add patient reported outcomes to their ongoing data collection. These measures might include:

Physical function

Symptoms

Utilities

Goals of care/preferences

Financial concerns

My slides are shared: http://bit.ly/1YqTaSJ.

It is refreshing to see

It is refreshing to see interest given to individuals in rural America. For nearly 20 years, the University of Alabama at Birmingham ( UAB) Comprehensive Cancer Center has worked in rural Alabama Black Belt and Mississippi Delta through the utilization of lay health workers called Community Health Advisors Trained as Research Partners            ( CHARPs). These volunteers are the foot solders on the ground and have linked an academic/medical community to rural medically underserved individuals for cancer screening, early detection, healthy lifestyle and limited community based cancer prevention research.

I have served as Program Manager/Director of these efforts led by Dr. Ed Partridge since 1998. In 2000, we received funding from NCI Center to Reduce Cancer Health Disparities as a Special Populations Network Grant  for a program called the Deep South Network for Cancer Control which ultimately was funded for the next 10 years through the Community Network Program ( Center) grants that has allowed a presence in these rural communities.

Ironically, as funding for these types of program are ending, the academic and research communities must finds ways to deliver the education, research and clinical services that are needed in rural communities. We all know the status- poverty, education, literacy, limited physicians/clinics and the list goes on. Nevertheless, our rural Americans need adequate funding and other resources to lessen the disparities that exist.

I have seen a lot of changes in rural ( African American) communities in my career that spans nearly 25 years, it is my hope and prayer that we can commit the resources and train a cadre of scientists and clinicians who are interested in improving disparities that exist in rural America.

 

Claudia M. Hardy, MPA

Program Director/Community Health Educator

UAB Comprehensive Cancer Center

 

Followers of this discussion

Followers of this discussion will be particularly interested in a new white paper from the National Implementation Research Network's Laura Louison and Oscar Fleming.  Context Matters: Recommendations for Funders and Program Developers Supporting Implementation in Rural Communitities explores how funders and program developers can partner with rural communities to achieve improved outcomes for individuals and families.

http://nirn.fpg.unc.edu/sites/nirn.fpg.unc.edu/files/resources/NIRN-Brief4-StrengthsCapacityRuralImplementation.pdf

Followers of this discussion

Followers of this discussion will not be surprised to learn that cancer gap between rural and urban Americans continues to grow in the United States. A new  CDC report shows that cancer death rates are falling more slowly in rural areas than in urban areas, but proven strategies can help reduce these disparities.

While rural areas have lower rates of new cases of cancer (incidence rates) than urban areas, they have higher cancer death rates. Incidence rates were higher in rural areas for several cancers, including those linked to tobacco use such as lung cancer, and those that can be prevented by screening such as colorectal and cervical cancers.

This report is the first comprehensive description of cancer incidence and deaths in rural and urban areas.

To reduce these gaps, health care providers in rural areas can:

Many of you within the R2R community already have programs underway to redress cancer-related disparities.  We would be grateful to learn more about your initiatives!

The decrease in cancer death

The decrease in cancer death rates in the United States has been uplifting news for the nation and a great source of hope for the cancer research community. A point of frustration, however, has been the continued ethnic/racial and socioeconomic disparities in cancer outcomes.

Two new studies are putting a spotlight on disparities that have received less attention: those in rural communities across the country. The studies—one by NCI researchers (on which I’m a coauthor) and one led by researchers from the Centers for Disease Control and Prevention (CDC)—found that cancer death rates are higher in rural areas than in urban areas. The CDC study also showed that, although cancer deaths rates are decreasing in rural areas, they are doing so more slowly than they are in urban areas.

Rural health disparities are not a new issue for NCI. In an interview for Cancer Currents last year, in fact, I discussed cancer disparities in rural communities across the country, and some of our early efforts toward revisiting this long-standing public health challenge.

What I did not and could not predict at the time, however, was the impact the recent presidential election would have on the visibility of rural America in the national debate about our economy, the future of the middle class, and the role of poverty and geography in access to quality health care.

Cancer in Rural America: An Ongoing Dialogue

The cancer community has long been part of this dialogue. In the early 1990s, for instance, NCI funded the Central Highlands Appalachian Leadership Initiative on Cancer, which focused not on a minority group, as traditionally defined, but on a mostly white rural population in one of the poorest regions of the country.

NCI-funded researchers in Kentucky, Ohio, and West Virginia, among others states, have continued this long tradition of attention to cancer control in Appalachia, with signature efforts in cancer surveillance, colorectal cancer screening, and more recently, HPV vaccination.

The increased attention toward rural health has been driven not only by politics but also by important advances in population health research. For example, the availability of more granular data—the result of improved surveillance of both diseases and risk factors—has allowed scientists to describe disease patterns in regions of the United States at a more localized level.

Also, more sophisticated analyses of disease trends and patterns have stimulated research in a variety of disciplines—including health policy, environmental epidemiology, and medical sociology.

Finally, as the new studies discussed above demonstrate, the publication and dissemination of compelling work in health geography by investigators in both academia (e.g., the University of Wisconsin’s County Health Rankings and Roadmaps)

The rapid growth of geospatial data utilization in many areas of health research was the impetus for NCI’s first national conference on its use in cancer research. Exemplars of this work were published in April 2017 in Cancer Epidemiology, Biomarkers and Prevention.

Reaching Out to the Community

To inform NCI’s efforts to better address cancer disparities in rural communities, NCI has been busy consulting a wide variety of experts and analyzing the research evidence on rural cancer control.

These efforts will dovetail with work on rural health already underway by other federal agencies, including the Health Resources and Services Administration’s Federal Office of Rural Health Policy, the Centers for Medicare and Medicaid Services’ (CMS) Rural Health Council, and the CDC’s recently launched rural health initiative.

CDC, in particular, will be a key partner as we scale up NCI’s research efforts. Our two agencies already have several ongoing collaborative initiatives that can be leveraged, including the Cancer Prevention and Control Research Network

Recently, I joined colleagues from CDC, CMS, the Veterans Health Administration, and 10 other agencies at the 5th Annual Public–Private Collaborations in Rural Health Meetingin Washington, DC. Participants discussed challenges in many areas—including health reform (especially Medicaid), rural hospital closures, and the hollowing out of local public health infrastructure—and shared lessons learned from a wide variety of research projects and programs.

An important conclusion that emerged from this meeting is that NCI can respond to the needs of government agencies and nonprofit partners working on rural health by supporting implementation science that informs the allocation of precious resources at the local level.

For instance, during this meeting, telehealth was often cited as a tool that can help to solve some of these disparities. Unfortunately, the evidence base on how best to scale-up and implement telehealth solutions is incomplete.

Clearly, we and our colleagues in the cancer community need to make better use of the wealth of experience and knowledge within these organizations, and we plan to do just that.

Critical Role of NCI-Designated Cancer Centers

NCI-Designated Cancer Centers can play a larger role in rural cancer control, and some centers already are.

NCI requires each NCI-Designated Cancer Center to define its catchment areas—in other words, the characteristics of the population in the geographic area it serves—and describe how the center extends its reach within and beyond that area to bring its expertise to bear on more diverse, wider populations.

To incentivize cancer center engagement in population health and facilitate adherence to NCI’s catchment area characterization requirements, we provided supplemental funding to 15 cancer centers to collect additional data concerning their catchment area population and align local measures with national ones, enabling more direct comparisons across centers and with national surveillance data.

In addition, to advance rural health research methods, we are also working with the National Academies of Science, Engineering, and Medicine to conduct research in small population groups.

Tackling Challenges

Although there are numerous challenges to making progress in this area, some that seem to be surprisingly simple are far from it.

For example, one of the biggest disconnects that remains between science and policy discussions around rural health is the idea that “rural” populations are often only thought to include whites. The data clearly demonstrate, however, that some of the most severely disadvantaged and unhealthy people in America are people of color in rural areas.

recent analysis of counties served by rural health clinics, in fact, found that in the southeastern United States, 23% of the rural population is African American. The same counties had the lowest per capita number of primary care physicians of any region in the country. As Mara Casey Tieken, Ed.D., the author of Why Rural Schools Matter, recently wrote, this narrow definition of rural is not only wrong, but has important repercussions.“In defining rural white America as rural America, academics and lawmakers are perpetuating an incomplete and simplistic story about the many people who make up rural America and what they want and need,” Dr. Tieken explained.

Sadly, many of today’s research questions in rural health appear to have changed very little from those that were being asked more than two decades ago.

Given our modest progress in answering these questions, I believe the time is right for NCI to convene the cancer research community around the status, challenges, and opportunities in cancer control in rural communities. The planning for this meeting, scheduled for May 2018, has already begun.

In the meantime, NCI will continue to work with the cancer community and others to refine and reinvigorate our cancer control efforts in rural areas across the country.

Note: This post originally appeared in Cancer Currents