Enhancing citizen engagement in cancer screening through deliberative democracy.

Cancer screening is widely practiced and participation is promoted by various social, technical, and commercial drivers, but there are growing concerns about the emerging harms, risks, and costs of cancer screening. Deliberative democracy methods engage citizens in dialogue on substantial and complex problems: especially when evidence and values are important and people need time to understand and consider the relevant issues. Information derived from such deliberations can provide important guidance to cancer screening policies: citizens' values are made explicit, revealing what really matters to people and why. Policy makers can see what informed, rather than uninformed, citizens would decide on the provision of services and information on cancer screening. Caveats can be elicited to guide changes to existing policies and practices. Policies that take account of citizens' opinions through a deliberative democracy process can be considered more legitimate, justifiable, and feasible than those that don't.

[1]  P. Gøtzsche,et al.  Screening for breast cancer with mammography. , 2013, The Cochrane database of systematic reviews.

[2]  S Kamen,et al.  The task force. , 1976, Journal of hospital dental practice.

[3]  K. McPherson Screening for breast cancer—balancing the debate , 2010, BMJ : British Medical Journal.

[4]  R. M. Thorner,et al.  Principles and Procedures in the Evaluation of Screening for Disease. , 1961 .

[5]  A. Dans,et al.  Trade-off between benefit and harm is crucial in health screening recommendations. Part I: general principles. , 2011, Journal of clinical epidemiology.

[6]  Richard J. Ablin,et al.  The Great Prostate Mistake , 2010 .

[7]  H. Adami,et al.  Overdiagnosis of Invasive Breast Cancer Due to Mammography Screening: Results From the Norwegian Screening Program , 2012, Annals of Internal Medicine.

[8]  G. Yamey,et al.  The PSA storm , 2002, BMJ : British Medical Journal.

[9]  N. Armstrong,et al.  The sociology of medical screening: past, present and future. , 2012, Sociology of health & illness.

[10]  M. V. von Euler-Chelpin,et al.  Performance indicators for participation in organized mammography screening. , 2012, Journal of public health.

[11]  Len Lichtenfeld,et al.  Overdiagnosed: Making People Sick in Pursuit of Health , 2011 .

[12]  C. Paul,et al.  Public good, personal privacy: a citizens' deliberation about using medical information for pharmacoepidemiological research , 2009, Journal of Epidemiology & Community Health.

[13]  R. Ablin,et al.  Screening for prostate cancer: Controversy? What controversy? , 2009, Current oncology.

[14]  P. Gøtzsche,et al.  Breast screening: the facts—or maybe not , 2009, BMJ : British Medical Journal.

[15]  V. Chang Affect and heart disease , 2008, BMJ : British Medical Journal.

[16]  J. Biollaz,et al.  Effect of population-based screening on breast cancer mortality , 2012, The Lancet.

[17]  R. Mcgee,et al.  Making policy decisions about population screening for breast cancer: the role of citizens' deliberation. , 2008, Health policy.

[18]  T. Bodenheimer The Oregon Health Plan--lessons for the nation. Second of two parts. , 1997, The New England journal of medicine.

[19]  D. Barker,et al.  Epidemiology for the uninitiated. Screening. , 1978, British medical journal.

[20]  Steve Bhimji,et al.  Agency for Healthcare Research and Quality (AHRQ) , 2015 .

[21]  The future of public deliberation on health issues. , 2012, The Hastings Center report.

[22]  B. G. Blijenberg,et al.  Prostate-cancer mortality at 11 years of follow-up. , 2012, The New England journal of medicine.

[23]  A. Raffle,et al.  Information about screening – is it to achieve high uptake or to ensure informed choice? , 2001, Health expectations : an international journal of public participation in health care and health policy.

[24]  T. Bodenheimer The Oregon Health Plan--lessons for the nation. First of two parts. , 1997, The New England journal of medicine.

[25]  Do the benefits of screening mammography outweigh the harms of overdiagnosis and unnecessary treatment? , 2011, The Medical journal of Australia.

[26]  John Gastil,et al.  From Group Member to Democratic Citizen: How Deliberating with Fellow Jurors Reshapes Civic Attitudes , 2008 .

[27]  Heidi C. Pearson,et al.  Poor knowledge regarding the Pap test among low-income women undergoing routine screening. , 2005, Perspectives on sexual and reproductive health.

[28]  Graham Smith,et al.  The theory and practice of citizens' juries , 1999 .

[29]  V. Braun,et al.  'With the best of reasons': cervical cancer prevention policy and the suppression of sexual risk factor information. , 1999, Social science & medicine.

[30]  M. Stefanek Uninformed compliance or informed choice? A needed shift in our approach to cancer screening. , 2011, Journal of the National Cancer Institute.

[31]  Ja Wilson,et al.  Principles and practice of screening for disease , 1968 .

[32]  P. Glasziou,et al.  Informed consent for screening by community sampling. , 2000, Effective clinical practice : ECP.

[33]  Robert E. Goodin,et al.  Deliberative Impacts: The Macro-Political Uptake of Mini-Publics , 2006 .

[34]  P. Bossuyt,et al.  Informed choice for screening: implications for evaluation , 2006, BMJ : British Medical Journal.

[35]  E. Willis The Prostatic Imperative and the Social Relations of Medical Technology , 1997, International Journal of Technology Assessment in Health Care.

[36]  L. Irwig,et al.  Communicating about screening , 2008, BMJ : British Medical Journal.

[37]  C. Kuhl,et al.  MRI breast screening – Authors' reply , 2008, The Lancet.

[38]  G. Rowe,et al.  What is good public deliberation? , 2012, The Hastings Center report.

[39]  Stephen W. Leslie,et al.  What the U.S. Preventive Services Task Force Missed in Its Prostate Cancer Screening Recommendation , 2012, Annals of Internal Medicine.

[40]  J. Gray,et al.  Screening: Evidence and Practice , 2019 .

[41]  Steven H. Woolf,et al.  Patient Education on Prostate Cancer Screening and Involvement in Decision Making , 2007, The Annals of Family Medicine.

[42]  L. Schwartz,et al.  The benefits and harms of mammography screening: understanding the trade-offs. , 2010, JAMA.

[43]  Mita Giacomini,et al.  Bringing 'the public' into health technology assessment and coverage policy decisions: from principles to practice. , 2007, Health policy.

[44]  Implementing a public deliberative forum. , 2012, The Hastings Center report.

[45]  V. Moyer,et al.  Screening for Cervical Cancer: U.S. Preventive Services Task Force Recommendation Statement , 2012, Annals of Internal Medicine.

[46]  Stephanie Solomon,et al.  Why and when should we use public deliberation? , 2012, The Hastings Center report.

[47]  P. Gøtzsche,et al.  Still awaiting screening facts , 2010, BMJ : British Medical Journal.

[48]  Floyd J Fowler,et al.  Enthusiasm for cancer screening in the United States. , 2004, JAMA.

[49]  P. Martus,et al.  MRI breast screening , 2008, The Lancet.

[50]  Simone Schrading,et al.  MRI for diagnosis of pure ductal carcinoma in situ: a prospective observational study , 2007, The Lancet.

[51]  W. Levinson,et al.  Not all patients want to participate in decision making , 2005, Journal of General Internal Medicine.

[52]  L. Trevena,et al.  Getting evidence into policy: The need for deliberative strategies? , 2011, Social science & medicine.

[53]  S. Thier Breast cancer screening: a view from outside the controversy. , 1977, New England Journal of Medicine.

[54]  Timothy J Wilt,et al.  Screening for breast cancer: U.S. Preventive Services Task Force recommendation statement. , 2009, Annals of internal medicine.

[55]  Carolyn J. Lukensmeyer,et al.  Public Deliberation: A Manager's Guide to Citizen Engagement , 2006 .

[56]  R. Hendrick,et al.  Revealing Oz behind the curtain: USPSTF screening mammography guidelines and the hot air balloon. , 2010, AJR. American journal of roentgenology.

[57]  Anne C. Beal,et al.  The Patient-Centered Outcomes Research Institute (PCORI) national priorities for research and initial research agenda. , 2012, Journal of the American Medical Association (JAMA).

[58]  S. Fletcher,et al.  Breast cancer screening: a 35-year perspective. , 2011, Epidemiologic reviews.

[59]  Lisa V John,et al.  To screen or not to screen, when clinical guidelines disagree: primary care physicians' use of the PSA test. , 2004, Preventive medicine.

[60]  Carmen L. Lewis,et al.  Decision-Making Processes for Breast, Colorectal, and Prostate Cancer Screening: The DECISIONS Survey , 2010, Medical decision making : an international journal of the Society for Medical Decision Making.

[61]  R. Ashcroft Fair Process and the Redundancy of Bioethics: A Polemic , 2008 .

[62]  A. Faulkner Resisting the screening imperative: patienthood, populations and politics in prostate cancer detection technologies for the UK. , 2012, Sociology of health & illness.

[63]  F. Schröder,et al.  Stratifying risk--the U.S. Preventive Services Task Force and prostate-cancer screening. , 2011, The New England journal of medicine.

[64]  A. Brett,et al.  Prostate-cancer screening--what the U.S. Preventive Services Task Force left out. , 2011, The New England journal of medicine.

[65]  P. Gøtzsche Mammography screening: truth, lies, and controversy , 2012, The Lancet.

[66]  Steven Woloshin,et al.  Ramifications of screening for breast cancer: 1 in 4 cancers detected by mammography are pseudocancers , 2006, BMJ : British Medical Journal.

[67]  Noel T Brewer,et al.  Systematic Review: The Long-Term Effects of False-Positive Mammograms , 2007, Annals of Internal Medicine.

[68]  Gerd Gigerenzer,et al.  Do Physicians Understand Cancer Screening Statistics? A National Survey of Primary Care Physicians in the United States , 2012, Annals of Internal Medicine.

[69]  A. Howson Cervical screening, compliance and moral obligation , 1999 .

[70]  P. Slovic Trust, Emotion, Sex, Politics, and Science: Surveying the Risk‐Assessment Battlefield , 1999, Risk analysis : an official publication of the Society for Risk Analysis.

[71]  Russell P. Harris Overview of screening: where we are and where we may be headed. , 2011, Epidemiologic reviews.

[72]  V. Ravitsky Conceived and deceived: the medical interests of donor-conceived individuals. , 2012, The Hastings Center report.

[73]  S. Goold,et al.  What is public deliberation? , 2012, The Hastings Center report.

[74]  Terry Connolly,et al.  Regret in cancer-related decisions. , 2005, Health psychology : official journal of the Division of Health Psychology, American Psychological Association.

[75]  Jill Sage,et al.  The Patient-Centered Outcomes Research Institute. , 2014, Bulletin of the American College of Surgeons.

[76]  H. Thornton Should we undertake an MRI breast screening trial? , 2007, The Lancet.

[77]  M. Kohn,et al.  Evidence-Based Diagnosis , 2009 .

[78]  B K Armstrong,et al.  Prostate‐specific antigen testing in Australia and association with prostate cancer incidence in New South Wales , 1998, The Medical journal of Australia.

[79]  M. Barry,et al.  One man at a time--resolving the PSA controversy. , 2011, The New England journal of medicine.

[80]  J. Hewison,et al.  Patient perspectives on information and choice in cancer screening: a qualitative study in the UK. , 2007, Social science & medicine.

[81]  DOWNLOAD EBOOK,et al.  Social Justice: The Moral Foundations of Public Health and Health Policy , 2013 .

[82]  Marshall Kg Prevention. How much harm? How much benefit? 4. The ethics of informed consent for preventive screening programs. , 1996 .

[83]  Timothy J Wilt,et al.  Screening for breast cancer: U.S. Preventive Services Task Force recommendation statement. , 2009, Annals of internal medicine.

[84]  S. Pearson,et al.  Which orphans will find a home? The rule of rescue in resource allocation for rare diseases. , 2012, The Hastings Center report.

[85]  A. Dans,et al.  Trade-off between benefit and harm is crucial in health screening recommendations. Part II: evidence summaries. , 2011, Journal of clinical epidemiology.

[86]  A. Sheedy,et al.  Handbook on Citizen Engagement: Beyond Consultation , 2008 .

[87]  Y. Bombard,et al.  Eliciting ethical and social values in health technology assessment: A participatory approach. , 2011, Social Science & Medicine (1967).

[88]  M. Stockler,et al.  Let sleeping dogs lie?: What men should know before getting tested for prostate cancer , 2010 .

[89]  J. Elmore,et al.  Overdiagnosis in Breast Cancer Screening: Time to Tackle an Underappreciated Harm , 2012, Annals of Internal Medicine.

[90]  Gerd Gigerenzer,et al.  Public Knowledge of Benefits of Breast and Prostate Cancer Screening in Europe , 2009, Journal of the National Cancer Institute.

[91]  Healthy debate? : an independent evaluation of citizens' juries in health settings , 1998 .

[92]  Eric M. Meslin,et al.  The Ethics of Information: Absolute Risk Reduction and Patient Understanding of Screening , 2008, Journal of General Internal Medicine.

[93]  A. M. Johnson Testing Treatments: Better Research for Better Healthcare , 2007 .

[94]  K. Fletcher,et al.  Adolescent and young adult women's misunderstanding of the term Pap smear. , 2003, Archives of pediatrics & adolescent medicine.

[95]  D. Altman,et al.  The benefits and harms of breast cancer screening: an independent review , 2012, British Journal of Cancer.