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Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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8


Dissemination Strategy

After evaluating the evidence, recommending new clinical diagnostic criteria for ME/CFS that address the needs of health care providers and patients and their caregivers, and suggesting a new name for ME/CFS (“systemic exertion intolerance disease” [SEID]), the committee’s final task was to develop an outreach strategy for disseminating its diagnostic criteria nationwide to health care professionals.

OBJECTIVE

The adoption of new clinical information can be a slow process, sometimes taking many years before new evidence-based findings make their way into clinical practice (Balas and Boren, 2000). With a constant flow of new information about the practice of medicine and patient care, it is difficult for health care providers to remain up to date. In addition, a provider may be aware of new information but not familiar with or able to accept or apply it. The objective of the committee’s dissemination strategy is to provide recommendations for dissemination of the new diagnostic criteria for SEID that will result in patients receiving this diagnosis in an accurate and timely manner.

CONTEXT

Prior to the implementation of any dissemination strategy, it is important to examine the internal and external environments that can influence the strategy—both positively and negatively. The internal environment

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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refers to the strengths, weaknesses, capacities, and resources of the Department of Health and Human Services (HHS) and its affiliated agencies. The external environment comprises those factors that are not controlled by HHS or its agencies but that need to be considered in designing and implementing the dissemination strategy.

Internal Environment

HHS and its affiliated agencies generally are well positioned to increase awareness of and familiarity with the new diagnostic criteria:

  • The Centers for Disease Control and Prevention (CDC) provided the initial case definition of CFS in 1988 and helped launch one of the first national programs to educate the American public and health care providers about the illness.
  • Surveys of the American public have found a relatively high level of trust of HHS—and an even greater trust of CDC—as agencies that provide factual information. A national survey conducted by the Pew Research Center during October 9-13, 2013, among 1,504 adults in the United States found that 75 percent had a favorable opinion of CDC—the highest level of approval among the 13 agencies included in the survey (Pew Research Center for the People & the Press, 2013).
  • Many studies point to a rise in use of the Internet by health care providers and the public to seek health information (Dolan, 2010; Fox and Duggan, 2013). A search of “chronic fatigue syndrome” on major search engines such as Google and Yahoo generated many federally managed websites among the top results. Information on websites controlled by CDC, the National Institutes of Health (NIH), and the Office on Women’s Health are ranked highly on search engine returns, which results in large numbers of annual visitors (CDC, 2014b). In contrast, a search of “myalgic encephalomyelitis” returns primarily nongovernmental or non-U.S. websites because of the relatively rare use of this term until 2011, when U.S. federal agencies began using the term “ME/CFS.”
  • HHS also has existing ties to many ME/CFS opinion leaders and advocates through its Chronic Fatigue Syndrome Advisory Committee and CDC’s Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Calls. These could be excellent venues for disseminating the committee’s diagnostic criteria and recommendations.
  • As the single largest payer for health care services in the United States (through Medicare and Medicaid), HHS has a great deal
Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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of influence over and ability to communicate with nearly all physicians.

While generally trusted by the American public, HHS and its affiliated agencies have faced strong criticism in previous years from patients with ME/CFS and their care providers and advocates. A Government Accountability Office (GAO) report released in June 2000 was highly critical of CDC’s appropriation of a significant proportion of CFS funds for programs and activities that were not related to CFS (GAO, 2000). HHS needs to be prepared to address possible questions or concerns regarding this issue and to share information about the positive changes that have been made since the GAO report was issued.

HHS also has faced some criticism for requesting that this committee be convened to develop new diagnostic criteria for ME/CFS. As noted in Chapter 1, a number of researchers and clinicians with strong ties to the ME/CFS community formally called for HHS to abandon this Institute of Medicine (IOM) effort and instead use the funds to support further ME/CFS research (An Open Letter, 2013).

External Environment

Several positive external environmental factors may support HHS in its efforts to disseminate the committee’s new diagnostic criteria. The following are examples:

  • Designated awareness efforts, such as International Chronic Fatigue Syndrome [and Fibromyalgia] Awareness Day, held on May 12, and National Chronic Fatigue Syndrome Awareness Month, held in March, have helped somewhat to raise general awareness of ME/CFS. These observances also have traditionally served as times to share information about ME/CFS, especially with the public.
  • A number of independent ME/CFS organizations exist both in the United States and internationally (e.g., the Solve ME/CFS Initiative and the ME Association in the United Kingdom) to support and share information with patients with ME/CFS and their care providers.

As dissemination activities are planned, however, it is also important to recognize the various external environmental factors that may present challenges to dissemination efforts. One of the more concerning of these external factors is the lack of awareness and continuing skepticism among many health care providers of ME/CFS as a legitimate physical illness.

Indeed, the main barriers to appropriate and timely diagnosis of

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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ME/CFS appear to be primarily attitudinal rather than knowledge based. A study published in 2010 by CDC found that 96 percent of health care providers were aware of ME/CFS and were able to recall accurately some symptoms associated with the 1994 Fukuda definition (Brimmer et al., 2010). Yet the same study also found that a significant portion of providers had doubts and misconceptions about the illness. Some providers still were expressing the belief that “people with [ME/CFS] are just depressed” and 30 to 43 percent link the illness to high socioeconomic status or pre-illness “competitive/compulsive” personality traits. These findings led the authors of the study to recommend that future education efforts for providers address diagnosis and be delivered through venues used by providers as their primary sources of reliable and accurate information. As part of the CDC study, physicians reported that professional journals, the Internet, and continuing education programs were their top three sources for information on ME/CFS. Similarly, a 2011 study found that 85 percent of health care providers still believed the illness was wholly or partially a psychiatric rather than a medical one (Unger, 2011). Numerous studies also have documented skepticism among clinicians about ME/CFS being a distinct clinical entity (Bayliss et al., 2014).

Other attitudinal barriers include physicians’ low self-efficacy and lack of positive outcome expectancy with respect to ME/CFS. A recent CDC-sponsored Medscape continuing medical education program found that a high percentage of the more than 2,000 respondents were “not at all confident” or only “somewhat confident” about making a diagnosis of ME/CFS (Harmon et al., 2014). In a separate study, almost 70 percent of clinicians who had previously diagnosed patients with ME/CFS still believed the illness to be more difficult to diagnose than other illnesses (Brimmer et al., 2010). Finally, some physicians, despite being somewhat knowledgeable about and believing in the legitimacy of the condition, may not share those thoughts with their patients because of the mistaken belief that giving them a diagnosis of ME/CFS will “inhibit a patient’s motivation to get better” as it prevents them from engaging fully with the existential conditions of their life, which is what they cannot cope with (Brimmer et al., 2010, p. 10). Consequently, successful dissemination of the committee’s new clinical diagnostic criteria will entail not only educating clinicians about the content of the criteria but also addressing the attitudes and beliefs that could hinder the criteria’s acceptance.

It is also important to note that, as discussed in Chapter 7, the diagnostic label “chronic fatigue syndrome” is viewed negatively by the majority of patients (Jason et al., 2004). Many patient groups argue that the label trivializes the illness and creates unnecessary stigma (Jason et al., 2007). In addition, a study found that physicians may even perceive the condition as being less serious as a result of this name (Jason et al., 2002).

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Finally, despite the above barriers to the accurate diagnosis of ME/CFS among health care providers, it is important for the dissemination of the new diagnostic criteria to build on previous efforts that have helped increase awareness of ME/CFS among health care providers and the public. Key to doing so will be the continued positioning of SEID as a legitimate disease that occurs in children and adults and should be properly diagnosed and treated. Another key is emphasizing that the diagnosis of SEID should be made if a patient fits the diagnostic criteria, instead of a diagnosis of exclusion being made after no medical explanation can be found for the patient’s symptoms. Many patients already diagnosed with ME/CFS will also qualify for the diagnosis of SEID and should receive the latter diagnosis and be cared for accordingly. Others who do not meet the new criteria should continue to be diagnosed by other criteria as their symptoms and evaluations dictate. In addition, it is essential that patients who do not qualify for a diagnosis of SEID receive appropriate care.

STRATEGIC CHOICES

Strategic choices that will inform the dissemination strategy relate to both audiences and messaging.

Audiences

To accomplish the task of disseminating the new diagnostic criteria for SEID nationwide to health care providers, multiple audiences will need to be included in the dissemination effort. The audiences identified include not only the key decision makers (i.e., primary care providers [PCPs]) but also other health care providers traditionally associated with the diagnosis and care of patients with ME/CFS. Audiences that can be engaged by HHS to help influence PCPs and other health care providers also have been identified.

Primary Care Providers

While it is important for a variety of health care providers to have knowledge of the new diagnostic criteria, the need to educate and influence PCPs is paramount. These professionals usually are the first providers seen by patients with SEID, and as with other chronic illnesses, they frequently continue to care for these patients over the long term. As noted by patients currently diagnosed with ME/CFS, their PCP’s lack of knowledge of the disorder or unwillingness to provide a diagnosis often has resulted in the need to see multiple physicians and unnecessary delays in diagnosis. An estimated 84 percent of Americans afflicted with what is currently known

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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as ME/CFS have yet to be diagnosed (Solomon and Reeves, 2004), and in one patient survey, many of those who had been diagnosed reported seeing more than five doctors across a period of 6 years or more before receiving their diagnosis (ProHealth, 2008). The committee believes that focusing dissemination efforts on reaching PCPs will increase awareness of and familiarity with the new clinical diagnostic criteria for SEID in a manner that will be most beneficial to patients.

According to the Agency for Healthcare Research and Quality, there are an estimated 300,000 PCPs in the United States. Potential PCPs for patients with SEID include

Additional Care Providers

While PCPs should be the primary target audience of the dissemination strategy, PCPs frequently will consult with specialists when making a diagnosis of SEID. In addition, many other health care providers often diagnose and/or care for patients with SEID (IACFS/ME, 2013). These secondary audiences include the following health care providers:

  • obstetricians/gynecologists (Montefiore Medical Center, 2013) (American College of Obstetricians and Gynecologists: www.acog.org),
  • emergency medicine practitioners (American Academy of Emergency Medicine: www.aaem.org),
  • psychologists (American Psychological Association: www.apa.org),
  • psychiatrists (American Psychiatric Association: www.psychiatry.org),
  • neurologists (FM/CFS/ME Resources, 2014) (American Academy of Neurology: www.aan.com),
Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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  • rheumatologists (American College of Rheumatology: www.rheumatology.org),
  • gastroenterologists (American College of Gastroenterology: www.gi.org),
  • sports medicine practitioners (American Medical Society for Sports Medicine: www.amssm.org),
  • sleep medicine practitioners (Jackson and Bruck, 2012) (American Academy of Sleep Medicine: www.aasmnet.org),
  • infectious disease practitioners (Infectious Diseases Society of America: www.idsociety.org),
  • cardiologists (DeNoon, 2003) (American College of Cardiology: www.cardiosource.org),
  • physical therapists (American Physical Therapy Association: www.apta.org),
  • occupational therapists (American Occupational Therapy Association: www.aota.org),
  • chiropractors (American Chiropractic Association: www.acatoday.org),
  • osteopathic practitioners (American Osteopathic Association: www.osteopathic.org), and
  • fitness instructors (American Council on Exercise: www.acefitness.org).

School-Based Professionals

Given that SEID has been shown to be among the top medical causes of long-term absence from school for the K-12 population (Crawley et al., 2011), outreach efforts also should target school nurses (National Association of School Nurses: www.nasn.org), school psychologists (National Association of School Psychologists: www.nasponline.org), and other professionals who have contact with children who have problems attending school because of health issues. Currently, some students with SEID and their families struggle to obtain accommodations for their education because school personnel do not understand the clinical impact of the illness.

Professional Societies

Studies have found that professional societies rank among health care providers’ top sources for new information. As such, they are an important audience for HHS’s efforts to reach out to and educate and influence health care providers. A sampling of potential societies was noted above; however, the committee recognizes that HHS should potentially consider many other societies as well.

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

Independent ME/CFS Organizations

In addition to professional societies, health care providers recognize patients as sources of new information. For this reason, it is important for HHS to engage organizations with strong connections to patients as well as other important audiences. Potential targets include

As discussed in earlier chapters, patients with SEID often have other comorbidities and thus seek help from organizations that focus on those conditions. Similarly, members of professional organizations that address these other conditions may encounter SEID. Some examples of such organizations are

Messaging

The messaging that is part of the dissemination strategy needs to support the objective of increasing awareness that SEID is a serious, chronic, complex, and multisystem medical condition, and that knowledge and use of the new diagnostic criteria will enable patients with SEID to receive an accurate diagnosis in a timely manner. Effective messaging informs, per-

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

suades, and moves a target audience to action. The following suggested messages are designed to serve as a framework for use in conjunction with all dissemination activities:

  • Patients deserve to receive an accurate diagnosis of their illness as quickly as possible.
  • SEID is a disease that occurs in both children and adults and needs to be properly diagnosed and managed.
  • The IOM’s new diagnostic criteria should be used to diagnose SEID quickly and accurately.
  • By using the new diagnostic criteria, health care providers will enable patients with SEID to receive the diagnosis of their illness and appropriate care.

With regard to the committee’s new term for ME/CFS, HHS’s messaging should communicate that the diagnostic label “systemic exertion intolerance disease” (SEID) more accurately reflects the disease’s characteristics than “ME/CFS.” It is also important to stress that adoption of the new name will help remove some of the stigma associated with the “ME/CFS” label.

In addition, as noted earlier, some patients diagnosed by other criteria, such as the Fukuda definition, may or may not fulfill all criteria for a diagnosis of SEID. HHS will need to communicate that all of these patients should still receive appropriate care.

DISSEMINATION ACTIVITIES

Strategic dissemination is vital for developing awareness of and familiarity with the new diagnostic criteria. Whenever possible, it is important to use the most direct tactics possible to reach the targeted audiences. It is also important to note that no single tactic is effective in all circumstances for all people. Successful dissemination will require the use of multiple tactics. The following tactics have been shown to be effective as means of sharing information with health care providers and influencing their behaviors.

Educational Material

HHS should explore options for producing and directly distributing (via traditional mail, email, or other means) an educational summary of this report and the new diagnostic criteria directly to PCPs. Information on how to obtain a copy of the full report should also be provided.

In addition, an audit should be conducted to identify any existing materials regarding ME/CFS that are already available from HHS and its

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

affiliated agencies (e.g., CDC’s Recognition and Management of CFS: A Resource Guide for Health Care Professionals) (CDC, 2014a). These materials should then be reviewed and updated as needed to reflect the committee’s new diagnostic criteria and terminology. HHS also should strive for consistent information and messaging across all of its agencies’ materials.

Presentations/Exhibits at Major Medical Meetings

Sharing information about the new diagnostic criteria and terminology at major medical meetings is an excellent way to reach large numbers of attending PCPs. In addition to having information about the new diagnostic criteria available to share as part of educational exhibits at these meetings, HHS should seek opportunities for opinion leaders (discussed later in this section) to be included as part of the formal program to allow for an in-depth presentation of the new diagnostic criteria and terminology. Examples of possible meetings to target include

As resources allow, HHS should pursue sharing information at additional medical meetings that reach not just PCPs but also the additional health care providers previously identified.

Online Outreach

Studies have found that physicians are increasingly using the Internet to locate information to assist in the treatment of patients and keep up to date on health topics (Google/Hall & Partners, 2009; Hornby, 2004; Wolters Kluwer Health, 2011). HHS should make information about the new diagnostic criteria and terminology available online, including both on

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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websites operated by HHS and its affiliated agencies and on leading third-party websites. Websites of HHS and its affiliated agencies include

HHS should undertake a thorough audit of all of its online resources to ensure that the information presented reflects the new criteria and terminology.

Examples of third-party websites that have been cited by health care providers as leading sources for new information include (De Leo et al., 2006; Glenn, 2013)

Collaboration with Professional Societies

PCPs and other health care providers trust their professional societies and use them as a resource for keeping up to date on health information. In addition to the aforementioned national meetings, large professional societies typically have available multiple channels of communication, such as websites, newsletters, and educational programming, to allow for the sharing of information with their members. HHS should seek opportunities to collaborate with these professional societies in the distribution of the new diagnostic criteria and terminology.

One of the most effective channels of communication available to professional societies is their journals, which, as noted earlier, rank among

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

the main resources used by health care providers to obtain information to aid in diagnosing patients. For example, the Journal of the American Medical Association has a regular column, “Medical News and Perspectives,” featuring news from various government agencies, while the New England Journal of Medicine has “Clinical Crossroads,” where an individual patient with a common medical problem is presented, followed by discussion of existing guidelines and recommendations. HHS should actively seek to have information about the new diagnostic criteria and terminology included in these journals.

As appropriate, HHS also should request that the societies express official support for this report. Any positive support for the new diagnostic criteria should then be shared and incorporated into any future communication activities.

Collaboration with Large Health Care Systems/Medical Groups, Managed Care Organizations, and Insurance Providers

Many PCPs and other health care providers are employed by large and highly organized health care systems/medical groups or managed care organizations (e.g., Ascension Health, Permanente Medical Groups). HHS should reach out to the largest of these systems to seek their assistance and ideas for educating their member physicians (SK&A, 2015). These organizations often have committees that review recent recommendations/guidelines and work to implement them within their own standards of care. HHS also should share the new diagnostic criteria with large insurance providers that issue diagnostic guides and manuals to participating physicians (Heilbrunn, 2014). In addition to private-sector organizations, HHS should reach out to federally supported provider networks, such as

  • National Association of Community Health Clinics,
  • Society of Federal Health Professionals, and
  • U.S. Public Health Service.

Media Outreach

PCPs and other health care providers are consumers of mass media, and they report that the media—particularly news outlets—play a significant role in their awareness of new health information (van Bekkum and Hilton, 2013). Targeted mass media outlets, including but not limited to broadcast, print, and online outlets, should be the focus of HHS efforts to share information about and obtain positive coverage of the new diagnostic criteria.

Given that SEID is more common among women than among men (Jason et al., 1999), HHS should make a special effort to secure coverage

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

with media outlets that reach women. However, approximately 25 percent of affected patients are men, and there is evidence suggesting that a similar condition, fibromyalgia, is underdiagnosed to a much greater extent in men than in women (Vincent et al., 2013). Therefore, efforts to educate professionals and the public via media sources that target men (e.g., the magazines Men’s Health and Men’s Fitness) also are needed. In addition, some studies suggest that ethnic minorities with SEID are diagnosed less frequently and may have a higher prevalence of and more severe illness (Jason et al., 1999, 2003), so it is important also to try to place stories with media outlets that reach these populations.

The submission of editorials by opinion leaders (see below) about the new diagnostic criteria and the need for physicians to overcome barriers to diagnosing patients with SEID would also be useful. This outreach should include traditional media outlets such as The New York Times and The Washington Post, as well as newer media outlets such as The Health Care Blog and KevinMD.com.

Social Media Outreach

Research has shown that social media applications may be an efficient and effective way for health care providers to keep up to date and to share newly acquired medical knowledge with other providers, thereby improving the quality of patient care (McGowan et al., 2012). As with its websites, HHS should employ the social media applications (Facebook, Twitter, blogs, etc.) used by the department and its affiliated agencies to help disseminate the new diagnostic criteria and terminology. Examples of possible activities include

Outreach to Opinion Leaders

Highly regarded individuals within the health care community influence the practice of their peers (Flodgren et al., 2011; Lomas et al., 1991; Valente and Davis, 1999). Thus, it is important for HHS to identify and educate opinion leaders within the existing ME/CFS professional and patient communities about the new criteria and terminology. These leaders

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

should then be enlisted to address barriers and promote the new criteria and terminology at every opportunity, both formally and informally. Members of this IOM committee, the HHS Chronic Fatigue Syndrome Advisory Committee, and the NIH Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Research Working Group could provide a good base of opinion leaders, as well as insight into other possible opinion leaders. It is important that the identified opinion leaders be thoroughly briefed on the new diagnostic criteria and terminology and be provided with approved talking points to help ensure consistent messaging.

Patient-Directed Interventions

Patients are increasingly seeking out health information, especially from the Internet, in addition to seeking help from health care providers (Diaz et al., 2002). They often share the information they discover directly with their providers or use the information to shape communication with their providers. As HHS seeks to include information for professionals on websites operated by the department and its affiliated agencies, it should include information for patients as well. In addition, any media outreach should include professional and general outlets to help inform both providers and patients.

To help increase awareness among possible patients with SEID, HHS also should work with ME/CFS organizations (identified previously) that serve as a resource for health care providers and patients. It is also recommended that CDC host a special CFS PCOCA Conference Call to discuss the new diagnostic criteria and terminology.

Educational Awareness Campaign

HHS should consider launching a public awareness campaign similar to that launched by CDC in 2006. This campaign should be a collaboration that includes appropriate federal agencies and participation by ME/CFS organizations and professional medical societies. The campaign should place a heavy emphasis on directly addressing barriers to PCPs’ adequately diagnosing SEID and explain the benefits of the new diagnostic criteria and terminology.

Collaboration with Training and Examination Organizations

Studies have found that younger and less experienced physicians may be more open to adopting new practices relative to older physicians (Francke et al., 2008). Therefore, efforts aimed at introducing the new diagnostic criteria to medical students and trainees should be considered. HHS should

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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share the new diagnostic criteria and terminology with the Association of American Medical Colleges (AAMC) and explore working with that organization to incorporate the new information into the curricula for medical students.

Furthermore, curricula of training programs often are dictated by topics that will be covered in various training examinations, so outreach to groups that develop and administer those examinations can be valuable. HHS should share the new diagnostic criteria and terminology with the American Council for Graduate Medical Education and National Board of Medical Examiners and work to have the new information accurately reflected in the examinations they administer.

Collaboration with Licensure and Certification Organizations

As with training and examination organizations, HHS should share information about the new diagnostic criteria and terminology with state medical licensing and certification boards. Opportunities to have the new information incorporated into the processes of these organizations should be explored.

Continuing Medical Education Opportunities

PCPs and other health care providers use continuing medical education as an opportunity to learn new information. In addition, continuing medical education points can be an incentive for providers to seek out specific information. HHS should work to update CDC’s current continuing medical education course Diagnosis and Management of Chronic Fatigue Syndrome (http://www.cdc.gov/cfs/education/diagnosis/index.html [accessed January 14, 2015]) to include information about the new diagnostic criteria.

Designation of an HHS Point Person

HHS should consider appointing an individual to oversee the dissemination of the new diagnostic criteria nationwide to health care professionals (i.e., a “SEID czar” within the department). This person should have access to the necessary resources and the authority to implement the dissemination plans for the new criteria and address any questions or concerns that arise. Having such an individual in place will also help demonstrate HHS’s responsiveness to this issue.

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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EVALUATION

As the dissemination strategy is implemented, it will be important for HHS to include an evaluation component in order to monitor progress. The evaluation should include both quantitative and qualitative measures. These measures should be established prior to the start of the implementation effort and reviewed periodically throughout its course to identify any issues and refine the strategy accordingly.

Examples of possible quantitative measures that HHS could use include tracking the number of visits to government websites containing SEID information and the number of health care providers reached at conferences/meetings where the new diagnostic criteria and terminology are presented. A possible qualitative evaluation measure is a study similar to the 2010 study “U.S. Healthcare Providers’ Knowledge, Attitudes, Beliefs, and Perceptions Concerning Chronic Fatigue Syndrome” (Brimmer et al., 2010). This study could serve as a baseline for the tracking of any changes in knowledge, attitudes, and behaviors among providers as a result of the new diagnostic criteria and terminology.

REFERENCES

An Open Letter. 2013. An open letter to the honorable Kathleen Sebelius, U.S. Secretary of Health and Human Services, September 23, 2013. https://dl.dropboxusercontent.com/u/89158245/Case%20Definition%20Letter%20Sept%2023%202013.pdf (accessed July 17, 2014).

Balas, E. A., and S. A. Boren. 2000. Managing clinical knowledge for health care improvement. In Yearbook of medical informatics 2000: Patient-centered systems, edited by J. Bemmel and A. McCray. Stuttgart, Germany: Schattinauer. Pp. 65-70.

Bayliss, K., M. Goodall, A. Chisholm, B. Fordham, C. Chew-Graham, L. Riste, L. Fisher, K. Lovell, S. Peters, and A. Wearden. 2014. Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: A meta synthesis of qualitative studies. BMC Family Practice 15(1):44.

Brimmer, D. J., F. Fridinger, J. M. Lin, and W. C. Reeves. 2010. U.S. healthcare providers’ knowledge, attitudes, beliefs, and perceptions concerning chronic fatigue syndrome. BMC Family Practice 11:28.

CDC (Centers for Disease Control and Prevention). 2014a. Recognition and management of chronic fatigue syndrome: A resource guide for health care professionals. http://www.cdc.gov/cfs/pdf/cfs-resource-guide.pdf (accessed July 23, 2014).

CDC. 2014b. Top referrers (inbound links) to CDC.gov. http://www.cdc.gov/metrics/cdcgov/referrers.html (accessed July 23, 2014).

Crawley, E. M., A. M. Emond, and J. A. C. Sterne. 2011. Unidentified chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: Surveillance outcomes from school-based clinics. BMJ Open 1(2).

De Leo, G., C. LeRouge, C. Ceriani, and F. Niederman. 2006. Websites most frequently used by physician for gathering medical information. AMIA Annual Symposium Proceedings Archive 902.

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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DeNoon, D. 2003. Tricky heart may cause chronic fatigue. http://www.webmd.com/chronicfatigue-syndrome/news/20030414/tricky-heart-may-cause-chronic-fatigue?lastselectedguid=%7B5FE84E90-BC77-4056-A91C-9531713CA348 (accessed August 4, 2014).

Diaz, J. A., R. A. Griffith, J. J. Ng, S. E. Reinert, P. D. Friedman, and A. W. Moulton. 2002. Patients’ use of the Internet for medical information. Journal of General Internal Medicine 17(3):180-185.

Dolan, P. L. 2010. 86% of physicians use internet to access health information. http://www.amednews.com/article/20100104/business/301049966/7 (accessed August 15, 2014).

Flodgren, G., E. Parmelli, G. Doumit, M. Gattellari, M. A. O’Brien, J. Grimshaw, and M. P. Eccles. 2011. Local opinion leaders: Effects on professional practice and health care outcomes. Cochrane Database of Systematic Reviews (8):Cd000125.

FM/CFS/ME (Fibromyalgia/Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) Resources. 2014. http://fmcfsme.com (accessed August 21, 2014).

Fox, S., and M. Duggan. 2013. Health online 2013. http://www.pewinternet.org/2013/01/15/health-online-2013 (accessed September 29, 2014).

Francke A. L., M. C. Smit, A. J. E. de Veer, and P. Mistiaen. 2008. Factors influencing the implementation of clinical guidelines for health care professionals: A systematic meta-review. BMC Medical Informatics and Decision Making 8.

GAO (Government Accountability Office). 2000. Chronic fatigue syndrome: CDC and NIH research activities are diverse, but agency coordination is limited. Washington, DC: GAO.

Glenn, B. 2013. Physicians’ top 5 most-used medical apps for smartphones and tablets. Medical Economics Online. http://medicaleconomics.modernmedicine.com/medicaleconomics/content/tags/american-ehr-partners/physicians-top-5-most-used-medical-appssmartph (accessed January 14, 2015).

Google/Hall & Partners. 2009. Connecting with physicians online. http://www.gstatic.com/ads/research/en/2009_ConnectingwithPhysiciansOnline.pdf (accessed August 4, 2014).

Harmon, M., C. Bateman, C. Lapp, and K. McCleary. 2014. Chronic fatigue syndrome: Diagnosis to management. http://www.medscape.org/viewarticle/581527_10 (accessed August 20, 2014).

Heilbrunn, E. 2014. Top health insurance companies: Best? Not necessarily. But these health insurers have the biggest market share. http://health.usnews.com/health-news/healthinsurance/articles/2013/12/16/top-health-insurance-companies (accessed December 12, 2014).

Hornby, K. 2004. The Internet as an evidence-based medicine tool. British Columbia Medical Journal 46:282-284.

IACFS/ME (International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis). 2013. ME/CFS management an approach to finding physician care. http://www.iacfsme.org/MECFSManagementAnApproachtoFindingPhysician/tabid/313/Default.aspx (accessed August 20, 2014).

Jackson, M. L., and D. Bruck. 2012. Sleep abnormalities in chronic fatigue syndrome/myalgic encephalomyelitis: A review. Journal of Clinical Sleep Medicine 8(6):719-728.

Jason, L. A., J. A. Richman, A. W. Rademaker, K. M. Jordan, A. V. Plioplys, R. R. Taylor, W. McCready, C. F. Huang, and S. Plioplys. 1999. A community-based study of chronic fatigue syndrome. Archives of Internal Medicine 159(18):2129-2137.

Jason, L. A., R. R. Taylor, S. Plioplys, Z. Stepanek, and J. Shlaes. 2002. Evaluating attributions for an illness based upon the name: Chronic fatigue syndrome, myalgic encephalopathy and Florence Nightingale disease. American Journal of Community Psychology 30(1):133-148.

Jason, L. A., A. V. Plioplys, S. Torres-Harding, and K. Corradi. 2003. Comparing symptoms of chronic fatigue syndrome in a community-based versus tertiary care sample. Journal of Health Psychology 8(4):459-464.

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
×

Jason, L. A., C. Holbert, S. Torres-Harding, and R. Taylor. 2004. Stigma and the term chronic fatigue syndrome. Journal of Disability Policy Studies 14(4):222-228.

Jason, L. A., J. Richman, N. Porter, and M. Benton. 2007. Why the name of an illness is of importance. Paper read at 8th International IACFS Conference, Florida.

Lomas, J., M. Enkin, G. M. Anderson, W. J. Hannah, E. Vayda, and J. Singer. 1991. Opinion leaders vs audit and feedback to implement practice guidelines. Delivery after previous cesarean section. Journal of the American Medical Association 265(17):2202-2207.

McGowan, B. S., M. Wasko, B. S. Vartabedian, R. S. Miller, D. D. Freiherr, and M. Abdolrasulnia. 2012. Understanding the factors that influence the adoption and meaningful use of social media by physicians to share medical information. Journal of Medical Internet Research 14(5):e117.

Montefiore Medical Center. 2013. Study finds young, minority women most likely to visit Ob/Gyn as primary care provider. News release. http://www.montefiore.org/body.cfm?id=1738&action=detail&ref=1031 (accessed September 2, 2014).

Pew Research Center for the People & the Press. 2013. Trust in government nears record low, but most federal agencies are viewed favorably. http://www.people-press.org/2013/10/18/trust-in-government-nears-record-low-but-most-federal-agencies-are-viewed-favorably (accessed September 29, 2014).

ProHealth. 2008. A profile of ME/CFS patients: How many years and how many doctors? http://www.prohealth.com/library/showarticle.cfm?libid=13672 (accessed August 28, 2104).

SK&A. 2015. SK&A’s 50 largest medical groups. http://www.skainfo.com/health_care_market_reports/largest_medical_groups.pdf (accessed January 12, 2015).

Solomon, L., and W. C. Reeves. 2004. Factors influencing the diagnosis of chronic fatigue syndrome. Archives of Internal Medicine 164(20):2241-2245.

Unger, A. 2011. CFS knowledge and illness management behavior among U.S. healthcare providers and the public. Paper read at IACFS/ME Biennial International Conference Ottawa, Ontario, Canada.

Valente, T., and R. Davis. 1999. Accelerating the diffusion of innovations using opinion leaders. The Annals of the American Academy 566.

van Bekkum, J., and S. Hilton. 2013. Primary care nurses’ experiences of how the mass media influence frontline healthcare in the UK. BMC Family Practice 14:178.

Vincent, A., B. D. Lahr, F. Wolfe, D. J. Clauw, M. O. Whipple, T. H. Oh, D. L. Barton, and J. St. Sauver. 2013. Prevalence of fibromyalgia: A population-based study in Olmsted County, Minnesota, utilizing the Rochester Epidemiology Project. Arthritis Care and Research 65(5):786-792.

Wolters Kluwer Health. 2011. Wolters Kluwer Health 2011: Point-of-care survey. http://www.wolterskluwerhealth.com/news/documents/white%20papers/wolters%20kluwer%20health%20survey%20executive%20summary-media.pdf (accessed September 2, 2014).

Suggested Citation:"8 Dissemination Strategy." Institute of Medicine. 2015. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, DC: The National Academies Press. doi: 10.17226/19012.
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Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are serious, debilitating conditions that affect millions of people in the United States and around the world. ME/CFS can cause significant impairment and disability. Despite substantial efforts by researchers to better understand ME/CFS, there is no known cause or effective treatment. Diagnosing the disease remains a challenge, and patients often struggle with their illness for years before an identification is made. Some health care providers have been skeptical about the serious physiological - rather than psychological - nature of the illness. Once diagnosed, patients often complain of receiving hostility from their health care provider as well as being subjected to treatment strategies that exacerbate their symptoms.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome proposes new diagnostic clinical criteria for ME/CFS and a new term for the illness - systemic exertion intolerance disease(SEID). According to this report, the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness. Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome stresses that SEID is a medical - not a psychiatric or psychological - illness. This report lists the major symptoms of SEID and recommends a diagnostic process.One of the report's most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis. The new criteria will allow a large percentage of undiagnosed patients to receive an accurate diagnosis and appropriate care.

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome will be a valuable resource to promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment.

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