Information on rare cancers Kathy Redmond Editor, Cancer World Magazine
 
Raising public awareness about rare cancers: challenges <ul><li>Heterogeneity of rare cancers </li></ul><ul><li>No clear p...
The goal of raising awareness in rare cancers is to ensure that patients with are diagnosed in a timely manner and gain ac...
Possible solutions <ul><li>Local, national or international rare cancer awareness campaign: </li></ul><ul><ul><li>Define a...
 
Working with the media is a double edged sword
Increasing non-specialist knowledge about rare cancers: challenges faced <ul><li>Most non-specialist have had limited educ...
Occam's razor and medicine <ul><li>Diagnostic parsimony: </li></ul><ul><ul><li>When diagnosing a given injury, ailment, il...
Possible solutions <ul><li>Raise non-specialist’s index of suspicion </li></ul><ul><ul><li>Public awareness campaigns </li...
Increasing exchange of information among rare cancer specialists: challenges faced <ul><li>It is difficult for specialists...
Possible solutions <ul><li>Establish reference networks for all rare cancers </li></ul><ul><li>Lobby conference organisers...
<ul><li>LIVE internet session ( http://www.e-eso.net )  </li></ul><ul><li>Interaction between the Speaker, the Discussant ...
Increasing patients’ knowledge about rare cancers: challenges faced <ul><li>Lack of information for many rare cancers </li...
Possible Solutions <ul><li>Resource pooling </li></ul><ul><ul><li>Reduce duplication of effort </li></ul></ul><ul><li>Leve...
Increasing policy makers’ awareness about rare cancers: challenges faced <ul><li>Competing health priorities and limited h...
Possible solutions <ul><li>Public awareness campaign </li></ul><ul><li>Political advocacy </li></ul><ul><ul><li>One voice ...
Conclusions <ul><li>There are many challenges faced in raising awareness about and exchanging information on rare cancers ...
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Rare Solid Cancers: An Introduction - Slide 4 - K. Redmond - Information on rare cancers

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  • Occam&apos;s razor: The principle of scientific or, in medicine, diagnostic parsimony or &amp;quot;unitarianism.&amp;quot; In medicine, a clinician would like to be able to use Occam&apos;s razor and come up with a unifying diagnosis that will explain all of the patient&apos;s problems. &amp;quot;Although we generally like to invoke Occam&apos;s razor, for some patients we cannot follow the rule of diagnostic parsimony.&amp;quot; (New Engl J Med 350: 600, 2004). William of Occam in the 14th century stated this principle: &amp;quot;The assumptions introduced to explain a thing must not be multiplied beyond necessity.&amp;quot; When discussing Occam&apos;s razor in contemporary medicine , doctors and philosophers of medicine speak of diagnostic parsimony. Diagnostic parsimony advocates that when diagnosing a given injury, ailment, illness, or disease a doctor should strive to look for the fewest possible causes that will account for all the symptoms. This philosophy is one of several demonstrated in the popular medical adage &amp;quot; when you are in Texas and you hear hoofbeats, think horses, not zebras .&amp;quot; While diagnostic parsimony might often be beneficial, credence should also be given to the counter-argument modernly known as Hickam&apos;s dictum , which succinctly states that &amp;quot;patients can have as many diseases as they damn well please.&amp;quot; It is often statistically more likely that a patient has several common diseases, rather than having a single rarer disease which explains their myriad symptoms. Also, independently of statistical likelihood, some patients do in fact turn out to have multiple diseases, which by common sense nullifies the approach of insisting to explain any given collection of symptoms with one disease. These misgivings emerge from simple probability theory—which is already taken into account in many modern variations of the razor—and from the fact that the loss function is much greater in medicine than in most of general science. Because misdiagnosis can result in the loss of a person&apos;s health and potentially life, it is considered better to test and pursue all reasonable theories even if there is some theory that appears the most likely. Diagnostic parsimony and the counter-balance it finds in Hickam&apos;s dictum have very important implications in medical practice. Any set of symptoms could be indicative of a range of possible diseases and disease combinations; though at no point is a diagnosis rejected or accepted just on the basis of one disease appearing more likely than another, the continuous flow of hypothesis formulation, testing and modification benefits greatly from estimates regarding which diseases (or sets of diseases) are relatively more likely to be responsible for a set of symptoms, given the patient&apos;s environment, habits, medical history and so on. For example, if a hypothetical patient&apos;s immediately apparent symptoms include fatigue and cirrhosis and they test negative for Hepatitis C , their doctor might formulate a working hypothesis that the cirrhosis was caused by their drinking problem , and then seek symptoms and perform tests to formulate and rule out hypotheses as to what has been causing the fatigue; but if the doctor were to further discover that the patient&apos;s breath inexplicably smells of garlic and they are suffering from pulmonary edema , they might decide to test for the relatively rare condition of Selenium poisoning . Prior to effective anti-retroviral therapy for HIV it was frequently stated that the most obvious implication of Occam&apos;s razor, that of cutting down the number of postulated diseases to a minimum, does not apply to patients with AIDS , as they frequently did have multiple infectious processes going on at the same time. While the probability of multiple diseases being higher certainly reduces the degree to which this kind of analysis is useful, it does not go all the way to invalidating it altogether; even in such a patient, it would make more sense to first test a theory postulating three diseases to be the cause of the symptoms than a theory postulating seven.
  • Rare Solid Cancers: An Introduction - Slide 4 - K. Redmond - Information on rare cancers

    1. 1. Information on rare cancers Kathy Redmond Editor, Cancer World Magazine
    2. 3. Raising public awareness about rare cancers: challenges <ul><li>Heterogeneity of rare cancers </li></ul><ul><li>No clear public health message </li></ul><ul><ul><li>For vast majority no prevention message other than healthy lifestyle </li></ul></ul><ul><ul><li>No mass screening </li></ul></ul><ul><li>Symptoms often vague and non-specific </li></ul><ul><ul><li>Raising awareness about vague symptoms: </li></ul></ul><ul><ul><ul><li>increase anxiety </li></ul></ul></ul><ul><ul><ul><li>Result in unnecessary and costly tests </li></ul></ul></ul><ul><li>Crowded awareness campaign space </li></ul><ul><li>Lack of resources </li></ul>
    3. 4. The goal of raising awareness in rare cancers is to ensure that patients with are diagnosed in a timely manner and gain access to state-of-the-art care
    4. 5. Possible solutions <ul><li>Local, national or international rare cancer awareness campaign: </li></ul><ul><ul><li>Define a clear message </li></ul></ul><ul><ul><li>Celebrity endorsement </li></ul></ul><ul><ul><li>Exploit social media </li></ul></ul><ul><ul><li>Targeted campaign </li></ul></ul><ul><ul><ul><li>Selected audiences </li></ul></ul></ul><ul><ul><ul><li>Selected journalists/media outlets </li></ul></ul></ul>
    5. 7. Working with the media is a double edged sword
    6. 8. Increasing non-specialist knowledge about rare cancers: challenges faced <ul><li>Most non-specialist have had limited educational input on rare cancers and see relatively few patients with rare cancer throughout their professional career </li></ul><ul><li>As a consequence: </li></ul><ul><ul><li>Low index of suspicion when confronted with a possible rare cancer </li></ul></ul><ul><ul><li>Can be difficult to differentiate symptoms from other conditions </li></ul></ul><ul><ul><li>Misdiagnosis is common </li></ul></ul><ul><ul><li>Referral for specialist treatment is sub-optimal </li></ul></ul>
    7. 9. Occam's razor and medicine <ul><li>Diagnostic parsimony: </li></ul><ul><ul><li>When diagnosing a given injury, ailment, illness, or disease a doctor should strive to look for the fewest possible causes that will account for all the symptoms. </li></ul></ul><ul><ul><li>“ When you are in Stresa and you hear hoofbeats, think horses, not zebras” </li></ul></ul><ul><li>Hickham’s dictum </li></ul><ul><ul><li>“ Patients can have as many diseases as they damn well please.&quot; </li></ul></ul>
    8. 10. Possible solutions <ul><li>Raise non-specialist’s index of suspicion </li></ul><ul><ul><li>Public awareness campaigns </li></ul></ul><ul><ul><li>Collaboration with speciality and generalist associations </li></ul></ul><ul><ul><ul><li>Endocrinology </li></ul></ul></ul><ul><ul><ul><li>Gastroenterology </li></ul></ul></ul><ul><ul><ul><li>Neurology </li></ul></ul></ul><ul><ul><ul><li>General practice </li></ul></ul></ul><ul><ul><ul><li>Pathologists </li></ul></ul></ul><ul><ul><ul><li>Radiologists </li></ul></ul></ul><ul><ul><li>Ask patients to bring awareness information to family doctors </li></ul></ul>
    9. 11. Increasing exchange of information among rare cancer specialists: challenges faced <ul><li>It is difficult for specialists working in the rare cancer setting to collaborate and share expertise </li></ul><ul><li>Centres of expertise for most rare cancers are not linked at a national, European or global level </li></ul><ul><ul><li>No reference networks which would facilitate the exchange of experience, best practice and data </li></ul></ul><ul><li>Rare cancers not addressed sufficiently at cancer conferences </li></ul>
    10. 12. Possible solutions <ul><li>Establish reference networks for all rare cancers </li></ul><ul><li>Lobby conference organisers to include rare cancers on conference agendas </li></ul><ul><li>Exploit social media </li></ul><ul><ul><li>Develop expert consensus on practice </li></ul></ul><ul><ul><li>Discuss problems faced </li></ul></ul><ul><ul><li>Educate specialists </li></ul></ul>
    11. 13. <ul><li>LIVE internet session ( http://www.e-eso.net ) </li></ul><ul><li>Interaction between the Speaker, the Discussant and Participants </li></ul><ul><li>Held weekly (Thursdays) </li></ul><ul><li>Based on a combination of video-conference and internet technology </li></ul><ul><li>Free from commercial sponsorship </li></ul><ul><li>In collaboration with Nature Reviews Clinical Oncology </li></ul>ESO’s e-grandround: an innovative approach to educting health professionals across Europe
    12. 14. Increasing patients’ knowledge about rare cancers: challenges faced <ul><li>Lack of information for many rare cancers </li></ul><ul><ul><li>Often out of date </li></ul></ul><ul><ul><li>Not available in different languages </li></ul></ul><ul><ul><li>Not comprehensive </li></ul></ul><ul><li>Lack of resources to create information </li></ul><ul><li>Few patient support groups </li></ul><ul><ul><li>General cancer groups tend to focus on common cancers </li></ul></ul><ul><ul><li>Support groups are often far from patients’ home </li></ul></ul>
    13. 15. Possible Solutions <ul><li>Resource pooling </li></ul><ul><ul><li>Reduce duplication of effort </li></ul></ul><ul><li>Leverage available information and communication technologies </li></ul><ul><ul><li>Online communities </li></ul></ul><ul><ul><li>Social media </li></ul></ul><ul><ul><li>Google translate </li></ul></ul><ul><li>Support the establishment of rare cancer patient organisations </li></ul>
    14. 16. Increasing policy makers’ awareness about rare cancers: challenges faced <ul><li>Competing health priorities and limited health budgets </li></ul><ul><li>Crowded space makes it difficult to secure attention from policy makers </li></ul><ul><li>Rare cancer is complex </li></ul>
    15. 17. Possible solutions <ul><li>Public awareness campaign </li></ul><ul><li>Political advocacy </li></ul><ul><ul><li>One voice </li></ul></ul><ul><ul><li>Differentiate rare cancers from other health priorities </li></ul></ul><ul><ul><li>Clear messages about solutions </li></ul></ul>
    16. 18. Conclusions <ul><li>There are many challenges faced in raising awareness about and exchanging information on rare cancers </li></ul><ul><li>Targeted solutions are required to increase awareness about rare cancers and facilitate the exchange of information </li></ul><ul><li>Information and communication technologies provide an enormous resource to help raise awareness about rare cancers </li></ul>

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