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Improving Cancer Control in Rural Communities

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.


Posts/Comments

Hey Bob,

Hey Bob,

Thank you so much for your post about how NCI is approaching health disparities in rural communities! I really like your mention of the need to create research initiatives that are adaptive and customizable to particular communities. Interestingly, Research to Reality has highlighted a few researchers and projects that connect community collaboration with cancer control implementation in the past. I have included some of these resources below for anyone who is interested.

 

I would also like to pose a few questions for the R2R community as a whole:

  • Do you use community collaboration/engagement in your research or implementation process? How?
  • To what extent can or should communities be part of the research or implementation process?

 

R2R RESOURCES ON RURAL HEALTH AND CANCER CONTROL

Last month our featured partner was a community-based research organization, the High Plains Research Network, based in rural Colorado. They described how they engage community members in their research, shared lessons learned, and provided a lot of resources!

Past featured partners who work in rural areas include: Baretta Casey from Cervical Cancer Free Kentucky (CCFKY); Robin Vanderpool who is one of the leading investigators for 1-2-3 Pap: Easy Steps to Prevent Cervical Cancer; and Carrie May who is the Cancer Prevention Project Coordinator at the Department of Public Health at East Carolina University. Check out their featured partner pages to learn more about work being done in the rural United States!

We have an archived cyber seminar that includes a component on tobacco cessation in rural Pennsylvania.

Check out some of our other discussions that consider rural issues and strategies as well, including: mobile health initiatives, new/social media, and more on community engagement!

Disclaimer: This is a

Disclaimer: This is a solicited post and it is far more of a "my two cents" piece than data driven, though I do cite some studies we have done. I'll put our references at the end of the post. Please realize that much what I have to say relates to my experiences working as an oncologist in an impoverished urban area and as a family member of low income rural folks.

From my vantage point as a medical oncologist who used to practice at an urban Chicago hospital with an impoverished catchment area and now a health services researcher in Boston, rural poverty is "worse" than urban poverty. Any poverty is associated with multiple undesirable outcomes in a person's life and their family's.  Among these are low rates of health care across the cancer continuum is bad, but in urban areas, paradoxically people can literally have a hospital in their neighborhood and not get the cancer care they need.

Barriers to care include (1) travel to care because if you don't have a car, nor a friend with a car, and you are too poor to take a cab, buses and trains are the only way for many folks to get to healthcare setting. Without precise information regarding which bus and train routes that one needs to get to the hospital or how to make an appointment, folk may as well be 1,000 miles away. In the end, someone may call 911 to get them in the system once their malignancy is evident to others, a situation suggestive of vary advanced disease.  (2) Additionally, competing needs (e.g., childcare, grandchild care, caregiving a sick spouse, a neighborhood too dangerous to stray outdoors long enough to wait for a bus or be dropped off by the bus after the appointment after dark) may prevent many people from cancer screening visits and presentation to physicians with first symptoms.

However, among the urban poor who do gain access to care, differentials in treatment modalities (i.e., surgery, chemotherapy and radiation) were not evident. That is, we've found that they received each of the three modalities of care at similar rates. However, while rural folks have access issues too, (1) they may have no idea where to go for care, (2) a ride to care may be impossible because of distance (e.g., no car, no gas $$, no $$ to pay for a place to stay near the hospital).  However, rural residents have an additional problem that urban patients do not have. Even if they enter a health care system equipped to care for their cancer, the distance from their residence to the closest radiation therapy provider has been shown by us and several others to be correlated with care. That is, using the example of breast cancer, the longer distance, the less likely women with breast cancer s/p lumpectomy alone are to receive completion of their local control with a full uninterrupted course of radiation therapy.

At this moment in time, this finding suggests that one way to optimize health of patients for whom travel is a challenge, would be to treat with a big surgery in situations where a big surgery is equivalent to a smaller surgery with radiation or high dose radiation alone. Consider their travel distance and if long, consider a bigger surgery decrease their risk of local and/or regional relapse.

I knew a wonderfully compassionate surgeon in Chicago who did that routinely for patients for whom visits to the hospital were very difficult due to lack of social supports and poverty. This was because he had witnessed far too many breast cancer patients for whom travel was a challenge (often older women taking a long series of buses through dangerous neighborhoods, or patients traveling a long distance) get lumpectomies and not be able to return for radiation or finish radiation if they had started it because they were so tired they were unable to physically use the public modes of transportation needed to get them to treatment every day or simply lived too far away to come in every day. He has seen too many local and/or distant recurrences among these patients that a surgical paternalism evolved and he would treat these women with mastectomies. In a perfect world this would not happen, but our world is imperfect.

With respect to systematic changes to our health care system, a least one possible solution is within our grasp relies on national technology implementation. Akin to President Eisenhower's 1956 Federal-Aid Highway Act where 41,000 miles of national interstate roads were developed connecting the US, President Obama or his successor absolutely needs to create a national Wi-Fi system as well as a systematic approach to placement of publically accessible technology that can utilize these virtual roadways to allow those living in poverty (whether rural or urban) to access it to learn about the resources available to help them in a panoply of way including getting health care.

There could be a uniform website format whose contents vary based on ZIP code. Among other resources, it could identify public transportation routes to specific health care facilities, philanthropic organizations with resources for travel, the networks of families living near hospitals who voluntarily take patients in for a night or two, hospitals offering free care, other travel services. There are a wealth of grassroots solutions at present in oncology (e.g., the American Cancer Society website alone for example), but without access to the internet how can patients identify them?

Ubiquitous WiFi will also facilitate consultation with primary care doctors and social workers, and cancer specialists like medical oncologists, surgeons, and radiation oncologists via telemedicine or other mechanisms. Long-term follow-up would certainly be possible as well through this vector, but I would prioritize screening of curable cancers, treatment for curable cancers, and care at the end of life in pilot work.

It is a lot to ask, but poverty casts quite a long shadow so this issue may resonate with some scientists, grant makers, policy experts, and politicians as it has with me. It is a moral imperative to eliminate the socioeconomic disparities that yield two populations in our country, the haves and the have nots.  Until that happens, we as advocates of national access to cancer care can be squeaky wheels. Cleary, President Obama has done a great deal to begin do that already, but insurance is only part of the problem. Let's do even more and work hard to allow the entire US to be connected to health care through the internet and see what happens?

Elizabeth Lamont, MD, MS Boston, MA 02120

References

Lamont EB, He Y, Subramanian SV, Zaslavsky AM. Do socially deprived urban areas have lesser supplies of cancer care services? Journal of Clinical Oncology, 2012; 30(26): 3250-7. PMID: 22869877

Lamont EB, Zaslavsky AM, Subramanian SV, Meilleur A, He Y, Landrum MB. Elderly breast and colorectal cancer patients’ clinical course: patient and contextual influences. Medical Care, 2014; 52(9):809-17. PMID: 25119954

Meilleur AM, Subramanian SV, Plascak JJ, Fisher JL, Paskett ED, Lamont EB. Rural residence and cancer outcomes in the US: Issues and challenges. Cancer Epidemiology, Biomarkers, & Prevention 2013; 22(10):1657-67. PMID: 24097195

Dr. Croyle-I very much

Dr. Croyle-

I very much enjoyed reading your post about cancer control in rural communities and bringing attention to this important issue.  I am encouraged by the growing interest in this area and recently had the opportunity to write a review paper on the challenges of rural cancer care in the U.S. for Oncology. The key points you made in your post, along with those made by Dr. Lamont in her response, were very apparent in both the literature we reviewed and through the discussions we had with cancer clinicians who practice in rural areas.

A recurring theme from the clinicians we spoke with was how difficult it is to effectively address the psychosocial needs of rural cancer patients as they go through, and recover from, treatment. Data indicates that only 2% of healthcare social workers practice in rural areas, and almost no specialized oncology social works practice in rural areas (Whitaker 2006). Given the critical importance of knowledge regarding local services in effectively providing social work services, lack of social workers in rural communities leaves a huge gap.  In addition, rural providers report greater challenges in securing mental health services for their patients compared to urban providers (Reschovsky 2005), which may contribute to the poorer mental health functioning and greater anxiety and depression in rural cancer survivors (Burris 2010). As Dr. Lamont indicated in her response, expanded internet access and online resources for rural patients with cancer would go a long way.  In addition, workforce initiatives to expand social work and mental health services for rural cancer patients are critical and difficult to find in the literature.

Another recurring issue that comes up in our NCI Designated Comprehensive Cancer Center is the need to dig deeper into the geographic access issue to determine the extent to which distance vs. knowledge/education vs. financial constraints influence patient decisions on where to receive care and which types of treatments to receive.  Patients may receive care at small hospitals without cancer centers because they are closest, but also because they may simply not know about advantages of receiving certain types of treatment for particular types of cancer at larger, higher volume cancer centers.  For example, Stitzenberg et al found that over half of rectal cancer patients who received care at low volume centers could have reached a high volume facility by traveling less than 10 miles further (2009). I have made this the focus of my K07 award through NCI and look forward to better understanding the beliefs, needs and motivations of rural cancer patients. My research would not be possible without the SEER Cancer Registries, so I would like to take this opportunity to emphasize the importance of these rigorous, population-based registries that allow for research of people who don’t necessarily make it to the large cancer centers for treatment.

Thank you again for highlighting this issue, and I look forward to learning about the research endeavors of rural cancer care investigators and their community partners.

 

Mary Charlton, PhD

University of Iowa College of Public Health

 

References:

-Whitaker T, Weismiller T, Clark E, et al (2006). Assuring the sufficiency of a frontline workforce: A national study of licensed social workers. Special Report: Social Work Services for Children and Families. Washington, DC: National Association of Social Workers.

-Reschovsky JD, Staiti AB. Access and quality: does rural America lag behind? Health Affairs. 2005;24:1128-1139.

-Burris JL, Andrykowski M. Disparities in mental health between rural and nonrural cancer survivors: a preliminary study. Psychooncology. 2010;19:637-645.

-Stitzenberg KB, Sigurdson ER, Egleston BL, Starkey RB, Meropol NJ. Centralization of cancer surgery: implications for patient access to optimal care. Journal of Clinical Oncology. Oct 1 2009;27(28):4671-4678.

Wow, Thanks to those of you

Wow! Thanks to those of you commenting on rural cancer care and cancer survivorship.

The High Plains Research Network is committed to rural health care. The HPRN approach is really an asset-based approach. What works? And how do we get more of it? This work is based on the concepts from the 1960s book "Health is a Community Affair." First step is identify the problem shed, then identify, build, create, support the local asset shed. There is quite a bit of local success in rural communities, but sometimes these individual successes aren't the usual care. That is the benefit of a community-academic partnership. Through this partnership individual success can sometimes be developing and deployed into community success, regional success, state success.

We have a lot to learn from rural communities, both specific solutions as well as the approach of bringing together that asset shed, breaking down the silos so common to academia, and building the best solution.

Perhaps the key component to all of this is community engagement. Engaging patients, community members, stakeholders in co-creating the research makes it locally relevant, actionable, and sustainable. And this engagement is not just about the usual suspects. One needs community members that are truly experts at living in their community; navigating the educational and health care arena, understanding the local communication venues (who need to know what and when and where.) Local community members have expertise. Combine this local expertise with the academic research expertise and you can create great programs that matter and make a difference.

Is rural a disparity group? Absolutely. But, just like many underserved groups have solved some of their problems, so have rural communities. And with some additional targetted investment, rural communities (and other health disparity groups) can create truly amazing solutions. We can't (or shouldn't) do it for them. But is sure is inspiring to work together. 

I am lucky to have the opportunity to work with the patients, community members, physicians, nurses, hospitals, and public health agencies in eastern Colorado.

Thanks

Jack Westfall, MD, MPH

Director, High Plains Research Network

Good afternoon, My name is

Good afternoon, My name is Robin Vanderpool, and I'm an Associate Professor in the University of Kentucky College of Public Health, member of the UK Markey Cancer Center, and long-time member of the R2R community.

Recently, we've received some good news related to internet provision in Appalachian Kentucky through the support of the Shaping Our Appalachian Region (SOAR) Initiative sponsored by Congressman Hal Rogers:http://www.kentucky.com/news/state/article82157237.html However, this exciting news was recently tempered by a report from Virginia Commonwealth University indicating that life expectancy is lowest in our eastern Kentucky counties, highlighting the importance of place (and socioeconomics) and its impact on our health and wellbeing.http://www.kentucky.com/news/state/article81990682.html

The University of Kentucky Markey Cancer Center is dedicated to eliminating the cancer disparities throughout the state, and particularly in our eastern KY counties. We recently had the good fortune to participate in a conference call with Drs. Lowy and Croyle from NCI and other NCI-designated cancer centers to discuss rural cancer prevention and control issues in our catchment area. We were able to highlight our successful efforts to improve CRC screening (and resultant incidence/mortality rates) through the use of local data and multi-level evidence-based approaches and advocate for similar models to improve lung cancer screening and HPV vaccination rates in our rural communities. We also discussed our efforts to provide our rural communities with high quality cancer services and research studies via the Markey Cancer Center Affiliate and Research Networks. We're excited that our new Markey NON Community Health Educator, Mindy Rogers, will be a part of these efforts as well.

We also discussed the importance of D&I research in rural communities, and how these efforts require extensive assessment, training, tailoring, funding and resources, and adaption, but yet have such great potential to bring evidence-based cancer control programming and interventions to our underserved residents. We also advocate for the use of local cancer surveillance data to improve health assessments and planning efforts in our rural communities. As Dr. Gil Friedell eloquently stated, "If the problem is in the community, the solution is in the community!"

We are excited that NCI is invested in improving the cancer outcomes in our rural communities and look forward to being a part of this conversation!

It is great that Dr. Croyle

It is great that Dr. Croyle has mentioned implementation science in the context of rural disparities. This is so important as we work to reduce disparities in access to established cancer prevention strategies.

Our developing collaborations in Southern Illinois and South-east Missouri all show that additional barriers to follow-up of positive screening tests are present when we add remote living and access to diagnostic services to the challenges of our underserved populations.

In Missouri, rural counties have lower up to date rates for colorectal cancer screening. These data relate to reported screening and may underestimate the gaps in follow-up of those who screen positive.

We need more implementation science research to identify the multilevel strategies that will work to coordinate care across providers, across distance, and across state lines:

  • What changes in medical record systems can support coordination of preventive services?
  • How can we more readily accept that data from disparate medical record systems will provide useful outcome measures for implementation research studies conducted with our primary care providers in less resourced settings?

One of our ongoing activities is a quarterly meeting of breast health navigators that has grown from the St Louis metro region to a broader uptake by our State. How to build this network of peers among navigators to support all our region is a remaining challenge.

Our ongoing P20 supported by NCI is building capacity for disparities research with partners in Southern Illinois. With a common goal of reducing cancer disparities, we are building a track record of collaborative pilot studies that will launch larger studies. We clearly can document cancer disparities in many rural regions. How can we move beyond descriptive studies to scale up our research endeavors to address the gaps in implementation?

By not implementing what are known to be proven cancer prevention and screening interventions we allow millions of people to develop and die from highly preventable forms of cancer. 

Rural cancer disparities illustrate a huge gap that needs rigorous study to identify innovative approaches to identifying, understanding, and developing strategies for overcoming barriers to the adoption, adaptation, integration, scale-up, and sustainability of evidence-based cancer prevention interventions, tools, policies, and guidelines.

I am taking the opportunity

I am taking the opportunity to contribute to this discussion by referencing resources available to help local health departments with comprehensive cancer control programs. The National Association of County and City Health Officials (NACCHO) has a website dedicated to cancer control at www.LHDcancer.org, as well as a general webpage for cancer topics at www.naccho.org/programs/community-health/chronic-disease/cancer.

It is heartening to see NCI’s

It is heartening to see NCI’s response to rural cancer control needs. The Siteman Cancer Center (SCC) has a focus on issues of control in rural areas within its catchment area, but also in rural areas of Missouri that are isolated and impoverished.

 

The catchment area for the  is made up of 7 Missouri counties and the City of St. Louis (an independent entity) and 5 counties in Illinois, thus representing both urban and rural cancer needs. SCC investigators have addressed needs in rural areas within its catchment area in part by establishing the SCC-SIU (Southern Illinois University) School of Medicine Partnership (current P20 award and U54 application in 2017) and the Southern Illinois Healthcare Collaboration, the latter of which is aimed at reducing rural colon cancer disparities (pending U01 award). We also have branched out from our catchment area to work to areas with especially high need, for example partnering with local providers in the “Bootheel” region of Missouri, an impoverished area in the southeastern corner of the state, to better address cancer control needs.

 

A survey of rural providers from around the state of Missouri identified recent increases in cancers such as melanoma that are associated with the emergence of popular industries such as tanning beds, nail salons, etc. Local health departments lack the capacity to regulate these popular businesses, and the state of Missouri does not regulate indoor tanning salons. Children as young as 10 are allowed to tan.1

 

Towns with fewer than 10,000 residents lack the infrastructure to launch prevention and control efforts. This is compounded by the fact that trust in science is very low among many rural residents, creating skepticism about health messages. This heightens the need for efforts that are congruent with rural cultural perspectives, especially among residents of lower socioeconomic status.    

 

A major challenge is how to shape new technologies so that they are congruent with rural values and perspectives. Telehealth has been promoted since at least 1987 when Warnecke reported promise for televised smoking cessation programs.2 Yet, Mejia and others have identified impediments to its use in rural areas.3 More work is needed to integrate the best science from: (1) informational technology, (2) social and behavioral science on rural values/life perspectives and social environmental obstacles, and (3) health communication to address rural cancer needs. Actions to foster and support this avenue of transdisciplinary team science, in concert with local communities, have the potential to significantly improve cancer control among rural populations.

 

Information flow across rural settings and with urban specialty providers is another major obstacle to cancer control in Missouri and Illinois. Rural residents are more likely to live a distance from providers.4 Medical revenues are lower due to lower patient 

 

Factor % Rural (N=42,365,517) %Urban (N=177,114,306)
Household income <$35,000 43.6 35.1
College graduate 24.6 36.9
>65 years of age 19.8 16.6

Table 1. Sociodemographics of rural and urban US residents (adapted from 2009 BRFSS).

 

volume and older, sicker, and less well-insured patients.5 It is an enormous struggle to track screening and abnormal test results within and across rural systems. It likewise is a struggle to make meaningful use of Electronic Health Records (EMRs), for example to transmit to and receive information from specialty providers. All of these things increase the challenge of rural cancer control. They suggest the need to support EMR development and to identify and help design to test workable systems for information transfer. 

 

The need to integrate rural and urban cancer care is crucial. The impact of decreased access to specialty care in rural areas affects diagnosis, treatment course, and outcome of care. Rural families of children with cancer, for example, have greater out-of-pocket expenses, miss more days of work, and spend more time receiving emergent care at local hospitals. We have found both rural providers and urban specialists to express frustration with their inability to coordinate diagnosis and treatment.

 

Preliminary results from a  study by Walling and Gehlert include the following quotes from parents of rural children with cancer:6

 

   “Our local hospital is really truly not equipped for kids with cancer. They do not

    always have the right supplies”

 

    “We spend a full day coming. His appointment takes less than an hour, but we’re

     still driving 6 hours, so there goes your day”

 

    “When we were at St. Louis Children’s Hospital, we felt isolated from the rest

     of our family”

 

These preliminary findings strongly suggest the need for research across disciplines to identify obstacles to rural/urban cancer care coordination and to develop and test timely, accurate information transfer.

 

References:

 

1 Balaraman et al. Practices of unregulated tanning facilities in Missouri: Implications for statewide regulation. Pediatrics. 2013;131:415-22;

2Warnecke R B et al. The use of television for smoking cessation: an ongoing planned trial. In: Aoki et al. (eds): Smoking and health 1987;

3Mejia MG. Exploring barriers to telehealth use among early-stage lung cancer survivors in rural Appalachia. Presented to the Annual Meeting of the Society for Behavioral Medicine, 2016, Washington, DC

4Mattson J Transportation, distance, and health care for older adults in rural & urban areas. Transport Res Rec. 2011;2265:192-9;

52009 BRFSS

6Preliminary results from a study entitled “The Impact of Rural Residence on Pediatric Cancer Patients,” E. Walling and S. Gehlert

Thanks Dr. Croyle for drawing

Thanks Dr. Croyle for drawing attention to cancer disparities among rural and American Indian communities. 

Significant geographic variation in cancer incidence and mortality, both by cancer type and sex, is characteristic of American Indian and Alaska Native populations in the US.  UW Carbone Cancer Center (UWCCC) has partnered with Wisconsin American Indian tribes, and has been a sub-contractor of Spirit of EAGLES (UW SOE), a national Community Networks Program Center supported through NCI (JS Kaur, Mayo Clinic) for many years. A recent contribution by UW SOE to characterizing AIAN geographic variation notes that Wisconsin American Indians have the highest cancer mortality rates of all races in the state, and the highest lung cancer incidence rate of any American Indian population in the US.  We have also partnered with tribes in smoking cessation studies, mentoring American Indian students in health careers and developing an annual statewide American Indian cancer conference now in its 13th year. UW SOE’s PI, Alexandra Adams, MD PhD, is also nationally known for her obesity prevention research in partnership with tribes. 

Whatever UW SOE has accomplished rests with the many local community members who patiently taught us how to work with them in a good way that we might accomplish something new together.  Real partnerships with the people affected are as fundamental to reducing health disparities as quality data is to developing good research questions.  I am not suggesting that every disparities-related research project must be a community-based participatory one, but if we are serious about helping reduce disparities, we must partner with the people and communities affected because both the problem and solution are theirs.  I agree with you on the importance of recognizing the time and effort trust building takes in communities and incentivizing researchers accordingly.  I would also add the importance of supporting outreach and ongoing engagement with these communities as fundamental to doing good science.

In both American Indian and rural communities, long distances to facilities and limited transportation options—including the availability of serviceable vehicle and someone to drive—can impact treatment decisions, access to quality care and ultimately outcomes.  This is particularly true in frontier states and regions where the distance to facilities is measured in hours, not minutes.  Expanding the availability of cancer care via telehealth could be very helpful to a number of patients and families.  However, expanded communication service and broadband access in rural communities will likely have as much impact on cancer control through economic development that helps reduce social and economic disparities impacting chronic disease.

UWCCC launched its rural cancer disparities project seven years ago through an NCI National Outreach Network supplement to our Cancer Center Support Grant.  The supplement called for a community health educator to partner with a local community in the process of selecting, adapting and testing a new culturally appropriate cancer education intervention informed by health literacy principles.  Following an assessment UWCCC partnered with Adams County representatives to conduct the pilot phase of the project which resulted in a three module curriculum on cancer basics, prevention and screening.  A facilitator training guide and over 40 informational handouts were later added, and these materials are now known as Cancer Clear & Simple (CC&S). CC&S has expanded to additional rural counties and a UWCCC outreach clinic; CC&S has also been adapted for African Americans, and a Spanish version will be launched in Fall 2016.  Currently, the efficacy of CC&S and its capacity to lead to behavior change is being tested in a randomized study in partnership with the Adams Columbia Electric Cooperative, and with funding through an ACS disparities grant (L Jacobs). We have also launched a project to disseminate CC&S statewide in Wisconsin in partnership with UW Cooperative Extension, supported through a USDA Health and Safety award.

Our rural cancer disparities project has reinforced for us the diversity of rural communities even within our own catchment area, and the corresponding importance of “customization and adaptation,” which you noted.  We’ve also witnessed the impact of collaborative efforts at the community and county level in developing and implementing effective multi-faceted, multi-level interventions. The potential impact of local collaboration, and the close interplay of formal and informal relationships within a rural community, suggests possibilities for research in implementation science and cancer care delivery.

Thanks again, Dr. Croyle. Increased attention by NCI to these disparities is welcome. 

 

Rick Strickland

Program Director

Cancer Health Disparities Initiative

UW Carbone Cancer Center

I appreciate the interest

I appreciate the interest being paid to rural populations and the unique circumstances they face.

While there are many facets of rural/urban disparities that are worthy of exploration, I would also like to add that ‘rural’ is not a term in itself sufficient to identify such populations. Our own recent work (1,2) has shown that there are important variations in disease risk among similar rural populations in the US. Intuitively this makes sense, as one may readily envision that the life context of rural Georgia may significantly differ from rural Minnesota (think in terms of diet, social constructs and supports; local culture and ethnicities, etc.).

We’ve also recently published work describing how the very founding of rural communities in the US may have led to the emergence of genetic founder effects perhaps influencing disease susceptibility which may significantly vary over small geographical scales (3).

Thus, methodologies and interventions developed in more urban areas may be less suitable in rural areas – but to differing degrees based upon area. I would encourage further discussion on how rural populations may be better characterized, in terms of distance/isolation from services, local cultural and ethnic influences, and other important but locally-variable health determinants.

1.       Fogleman AJ, Mueller GS, Jenkins WD. Does where you live play an important role in cancer incidence in the U.S.? Am J Cancer Res. 2015 Jun 15;5(7):2314-9. eCollection 2015.

2.       Zahnd WE, Mueller GS, Fogleman AJ, Jenkins WD. Intrastate Variations in Rural Cancer Risk and Incidence: An Illinois Case Study. J Public Health Manag Pract. 2015 Jul 17. [Epub ahead of print]

3.       Jenkins WD, Lipka AE, Fogleman A, Delfino K, Malhi R, Hendricks B. Variance in disease risk: rural populations and genetic diversity. Genome. DOI: 10.1139/gen-2016-0077

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