patient advocacy

Summary

Summary: Promotion and protection of the rights of patients, frequently through a legal process.

Top Publications

  1. ncbi Decision making in laboring women: ethical issues for perinatal nurses
    Troy Carlton
    University of Colorado School of Nursing, Denver, USA
    J Perinat Neonatal Nurs 19:145-54. 2005
  2. ncbi Justifying coercion
    Paula K Vuckovich
    University of San Diego, CA, USA
    Nurs Ethics 12:370-80. 2005
  3. ncbi Developing a mid-range theory of patient advocacy through concept analysis
    Xiaoyan Bu
    College of Nursing, University of South Carolina, SC, USA
    J Adv Nurs 57:101-10. 2007
  4. ncbi Using navigators to improve care of underserved patients: current practices and approaches
    Daniel Dohan
    Institute for Health Policy Studies and Department of Anthropology, History, and Social Medicine, University of California San Francisco, CA 94118, USA
    Cancer 104:848-55. 2005
  5. ncbi Tragedy into policy: a quantitative study of nurses' attitudes toward patient advocacy activities
    Lisa M Black
    Orvis School of Nursing, University of Nevada, Reno, Nevada, USA
    Am J Nurs 111:26-35; quiz 36-7. 2011
  6. ncbi Cultural competence and patient advocacy: the new challenge for nurses
    Sarah Breier-Mackie
    Gastroenterol Nurs 30:120-2. 2007
  7. ncbi Patient Ombudsmen in seven European countries: an effective way to implement patients' rights?
    Lars Fallberg
    Eur J Health Law 10:343-57. 2003
  8. ncbi Individual patient advocacy, collective responsibility and activism within professional nursing associations
    Margaret Mahlin
    Michigan State University, East Lansing, MI 48824, USA
    Nurs Ethics 17:247-54. 2010
  9. ncbi Bridging the gap: a study of general nurses' perceptions of patient advocacy in Ireland
    Tom O'Connor
    School of Nursing and Midwifery, University College Dublin, Belfield, Dublin 4, Republic of Ireland
    Nurs Ethics 12:453-67. 2005
  10. ncbi Development and psychometric evaluation of the instrument: attitude toward patient advocacy
    Xiaoyan Bu
    College of Nursing, University of South Carolina, Columbia, SC 29208, USA
    Res Nurs Health 31:63-75. 2008

Detail Information

Publications242 found, 100 shown here

  1. ncbi Decision making in laboring women: ethical issues for perinatal nurses
    Troy Carlton
    University of Colorado School of Nursing, Denver, USA
    J Perinat Neonatal Nurs 19:145-54. 2005
    ..Ethical principles such as autonomy, veracity, beneficence, informed consent, standard of best interest, and obligations should be applied when caring for laboring women, framed by the ethics of caring...
  2. ncbi Justifying coercion
    Paula K Vuckovich
    University of San Diego, CA, USA
    Nurs Ethics 12:370-80. 2005
    ..The process of justifying coercion allows a nurse to engage in behavior generally disapproved of while retaining a self-image of a 'good' nurse...
  3. ncbi Developing a mid-range theory of patient advocacy through concept analysis
    Xiaoyan Bu
    College of Nursing, University of South Carolina, SC, USA
    J Adv Nurs 57:101-10. 2007
    The aim of this paper is to clarify and refine the concept of patient advocacy through synthesizing the advocacy literature in nursing and to establish a theoretical basis for future studies on patient advocacy in nursing.
  4. ncbi Using navigators to improve care of underserved patients: current practices and approaches
    Daniel Dohan
    Institute for Health Policy Studies and Department of Anthropology, History, and Social Medicine, University of California San Francisco, CA 94118, USA
    Cancer 104:848-55. 2005
    ..In this report, the authors have 1) defined patient navigation, distinguishing it from other cancer support services; 2) described how programs are organized; and 3) discussed the need for research on program effectiveness...
  5. ncbi Tragedy into policy: a quantitative study of nurses' attitudes toward patient advocacy activities
    Lisa M Black
    Orvis School of Nursing, University of Nevada, Reno, Nevada, USA
    Am J Nurs 111:26-35; quiz 36-7. 2011
    ..on Health Care, a study was conducted to examine Nevada RNs' experiences with workplace attitudes toward patient advocacy activities...
  6. ncbi Cultural competence and patient advocacy: the new challenge for nurses
    Sarah Breier-Mackie
    Gastroenterol Nurs 30:120-2. 2007
  7. ncbi Patient Ombudsmen in seven European countries: an effective way to implement patients' rights?
    Lars Fallberg
    Eur J Health Law 10:343-57. 2003
  8. ncbi Individual patient advocacy, collective responsibility and activism within professional nursing associations
    Margaret Mahlin
    Michigan State University, East Lansing, MI 48824, USA
    Nurs Ethics 17:247-54. 2010
    The systemic difficulties of health care in the USA have brought to light another issue in nurse-patient advocacy - those who require care yet have inadequate or non-existent access...
  9. ncbi Bridging the gap: a study of general nurses' perceptions of patient advocacy in Ireland
    Tom O'Connor
    School of Nursing and Midwifery, University College Dublin, Belfield, Dublin 4, Republic of Ireland
    Nurs Ethics 12:453-67. 2005
    ....
  10. ncbi Development and psychometric evaluation of the instrument: attitude toward patient advocacy
    Xiaoyan Bu
    College of Nursing, University of South Carolina, Columbia, SC 29208, USA
    Res Nurs Health 31:63-75. 2008
    Nurses' patient advocacy can influence patient outcomes. There is a lack of reliable and valid instruments on patient advocacy. The purpose of this study was to develop an instrument to measure nurses' attitudes toward patient advocacy...
  11. ncbi A journey of hope: lessons learned from studies on rare diseases and orphan drugs
    M Wästfelt
    Strategy and Development Office, Karolinska Institutet, Stockholm, Sweden
    J Intern Med 260:1-10. 2006
    ..These lessons, along with the crucial importance of cooperation between academic institutions, pharmaceutical companies, patient advocacy groups and society in the elucidation of rare diseases, are highlighted in the present review.
  12. ncbi Case management model or case manager type? That is the question
    Michael J Long
    Department of Public Health Sciences, Wichita State University, Kansas, USA
    Health Care Manag (Frederick) 20:53-65. 2002
    ..is proposed here: an interrogative model that relies on intense oversight with expected cost reduction and a patient advocacy model that relies on a brokering arrangement for services in the best interest of the patient...
  13. ncbi Development and implementation of a science training course for breast cancer activists: Project LEAD (leadership, education and advocacy development)
    K Dickersin
    Department of Community Health, Brown University School of Medicine, Providence, RI 02912, USA
    Health Expect 4:213-20. 2001
    ..To develop and implement Project LEAD (leadership, education, and advocacy development), a science course for breast cancer activists...
  14. ncbi The meaning of patient advocacy for Iranian nurses
    Reza Negarandeh
    Faculty of Nursing and Midwifery, Tehran University of Medical Sciences, Tehran, Iran
    Nurs Ethics 15:457-67. 2008
    b>Patient advocacy has been a topic of much discussion in the nursing literature for a number of decades. Ambiguities remain, however, concerning definitions of advocacy in nursing...
  15. ncbi Patient advocacy: a concept analysis
    Moyra A Baldwin
    Chester College of Higher Education, School of Nursing and Midwifery, Arrowe Park Hospital, Wirral
    Nurs Stand 17:33-9. 2003
    To clarify the ill-defined concept of patient advocacy and develop a model.
  16. ncbi Size matters -- patient organisations exaggerate prevalence numbers
    Anders Ternhag
    Department of Epidemiology, Swedish Institute for Infectious Disease Control, SE 171 82 Solna, Sweden
    Eur J Epidemiol 20:653-5. 2005
    ..To render other messages on their agenda more trustworthy, we propose that some patient organisations moderate their prevalence and/or incidence figures...
  17. pmc Design of a Randomised Controlled Trial (RCT) on the effectiveness of a Dutch patient advocacy case management intervention among severely disabled Multiple Sclerosis patients
    Klaske Wynia
    Department of Neurology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
    BMC Health Serv Res 10:142. 2010
    ..However, there is little evidence about the effectiveness of the patient advocacy case management model in clinical practice...
  18. ncbi Effects of case management for frail older people or those with chronic illness: a systematic review
    Barth Oeseburg
    Department of Health Sciences, Graduate School for Health Research, Wenckebach Institute, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands
    Nurs Res 58:201-10. 2009
    Financial constraints and quality requirements demand that interventions selected are most effective. A previous systematic review of the effectiveness of the patient advocacy case management model was not found.
  19. ncbi Administrative gatekeeping - a third way between unrestricted patient advocacy and bedside rationing
    Sigurd Lauridsen
    University of Copenhagen, Unit of Medical Philosophy and Clinical Theory, Institute of Public Health, University of Copenhagen, Panum Institute, Copenhagen, Denmark
    Bioethics 23:311-20. 2009
    ..At the same time, however, they are prohibited from including considerations of cost in their clinical decisions...
  20. ncbi An exploration of the way in which the concept of patient advocacy is perceived by registered nurses working in an acute care hospital
    E Watt
    Centre for Nursing Practices and Therapies, School of Nursing, LaTrobe University, Bundoora, Australia
    Int J Nurs Pract 3:119-27. 1997
    ..was to provide a beginning exploration of the way in which registered general nurses perceived the concept of patient advocacy. A qualitative approach was taken using the techniques of the grounded theory method...
  21. pmc The abandoned trials of pre-exposure prophylaxis for HIV: what went wrong?
    Jerome A Singh
    Centre for the AIDS Programme of Research, South Africa
    PLoS Med 2:e234. 2005
  22. ncbi Evaluating patient satisfaction with the Office of Patient Advocacy
    Nancy A Omondi
    Office of Patient Advocacy, Patient Services, National Marrow Donor Program, 3001 Broadway St NE, Suite 100, Minneapolis, MN 55413, USA
    J Cancer Educ 26:44-50. 2011
    ..The Office of Patient Advocacy provides services and health education materials to transplant patients, caregivers, and family members...
  23. ncbi Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material
    E S Nilsen
    Norwegian Knowledge Centre for the Health Services, Pb 7004 St Olavs Plass, Oslo, Norway 0130
    Cochrane Database Syst Rev 3:CD004563. 2006
    ..They can be organised in different forums and through different media. We anticipated finding few comparative evaluations that reliably evaluated the effects of consumer involvement...
  24. ncbi An exploration of the relationship between patient autonomy and patient advocacy: implications for nursing practice
    Deirdre Hyland
    St James s Hospital, Dublin, Republic of Ireland
    Nurs Ethics 9:472-82. 2002
    ....
  25. pmc Patient advocacy and arthritis: moving forward
    Amye L Leong
    Healthy Motivation, Daly City, CA 94015, USA
    Bull World Health Organ 82:115-20. 2004
    b>Patient advocacy is based on the premise that people have the right to make their own choices about their health care...
  26. ncbi A survey of patients' rights representatives in Israeli Hospitals: 1999-2000
    E Kismodi
    R.N. Patients Rights Consultation Center, Hungary
    Med Law 20:17-36. 2001
    ..It is recommended that a comprehensive program of training be devised for hospital patients' rights representatives, in order to realize the potential of the Act...
  27. ncbi Patient advocacy in the USA: key communication role functions
    Donald R Martin
    Department of Communication, DePaul University, Chicago, IL 60614, USA
    Nurs Health Sci 9:185-91. 2007
    Researchers have long documented the importance of patient advocacy programs as a means of providing customer service in health-care organizations...
  28. ncbi Patient advocacy and professional associations: individual and collective responsibilities
    Jennifer Welchman
    Department of Philosophy, University of Alberta, Edmonton AB, Canada T6G 2E5
    Nurs Ethics 12:296-304. 2005
    ..We conclude that patient and their nurses will suffer unnecessarily unless or until nursing associations cease to burden individual nurses with the responsibility for patient advocacy.
  29. ncbi From access to evidence: an advocate's journey
    Musa Mayer
    J Clin Oncol 21:3881-4. 2003
  30. ncbi A pilot study of selected Japanese nurses' ideas on patient advocacy
    Anne J Davis
    Nagano College of Nursing, Komagane, Japan
    Nurs Ethics 10:404-13. 2003
    ..Such a situation would not only influence notions of advocacy but also possibly render them more complex...
  31. ncbi Enhancing patient advocacy and social ethics
    Patricia Benner
    University of California, School of Nursing, Department of Social and Behavioral Sciences, San Francisco, Calif
    Am J Crit Care 12:374-5. 2003
  32. pmc Is there an advocate in the house? The role of health care professionals in patient advocacy
    L Schwartz
    Cancer Care Ontario, Toronto, Canada
    J Med Ethics 28:37-40. 2002
    It remains unclear what patient advocacy actually entails and what values it ought to embody...
  33. ncbi Governing the captives: forensic psychiatric nursing in corrections
    Dave Holmes
    University of Ottawa, Faculty of Health Sciences School of Nursing, Ottawa, Ontario, Canada K1H 8M5
    Perspect Psychiatr Care 41:3-13. 2005
    ..Nursing practice in forensic psychiatry opens up new horizons in nursing. This complex professional nursing practice involves the coupling of two contradictory socio-professional mandates: to punish and to provide care...
  34. ncbi The role of the clinical trial nurse in the informed consent process
    Franca Cantini
    Research Ethics Office, Sir Mortimer B Davis Jewish General Hospital, Montreal, Quebec, Canada
    Can J Nurs Res 39:126-44. 2007
    ..There is a need to develop specific practical and ethical guidelines for nurses involved with clinical trial research and to develop educational programs for nurses working in clinical research...
  35. ncbi Nursing advocacy: how is it defined by patients and nurses, what does it involve and how is it experienced?
    Heli Vaartio
    Department of Nursing Science, University of Turku, Turku, Finland
    Scand J Caring Sci 20:282-92. 2006
    ..Before nursing practice can truly adopt advocacy as an inherent and natural part of nursing, a clearer understanding is needed of how it is defined and what activities are needed to accomplish advocacy...
  36. ncbi A critical discourse analysis of provision of end-of-life care in key UK critical care documents
    Natalie Pattison
    University of Northumbria, Newcastle, UK
    Nurs Crit Care 11:198-208. 2006
    ..This article highlights certain practical and professional difficulties in providing end-of-life (EOL) care for patients in critical care units and explores discourses arising from guidelines for critical care services...
  37. ncbi Reclaiming the humanity in personality disorder
    Karen Wright
    Department of Nursing, University of Central Lancashire, Preston, UK
    Int J Ment Health Nurs 16:236-46. 2007
    ..We refer to this as a re-engagement with common humanity. Despite the singular national context, the discursive themes explored are not necessarily restricted to the UK...
  38. ncbi Exploring the ethical issues of the research interview in the cancer context
    S McIlfatrick
    School of Nursing, University of Ulster at Jordanstown, Shore Road, Newtownabbey, N Ireland BT 37 OQB, UK
    Eur J Oncol Nurs 10:39-47. 2006
    ..It is considered that the article potentially raises more questions that answers and illustrates that there are not always quick-fix solutions for the 'real-world' problems qualitative researchers' experience...
  39. ncbi Iatrogenic sexual dysfunction and the protective withholding of information: in whose best interest?
    A Higgins
    School of Nursing and Midwifery Studies, Trinity College Dublin, Dublin, Ireland
    J Psychiatr Ment Health Nurs 13:437-46. 2006
    ..In the light of contemporary mental health policy, findings from the study are discussed and recommendations for practice and education made...
  40. ncbi Doing the right thing: nursing students, relational practice, and moral agency
    Alesha Beckett
    Waikato District Health Board
    J Nurs Educ 46:28-32. 2007
    ..This article presents a collaborative account of the important relational work being undertaken by one group of nursing students in New Zealand...
  41. ncbi Autonomy, responsibility and the Italian Code of Deontology for Nurses
    Gaia Barazzetti
    Universita Vita Salute San Raffaele, Facolta di Filosofia, Palazzo Arese Borromeo, Via Borromeo, 20031 Cesano Maderno, Milan, Italia
    Nurs Ethics 14:83-98. 2007
    ..The results of the analysis also deserve further qualitative study and future consideration...
  42. ncbi Modes of rationality in nursing documentation: biology, biography and the 'voice of nursing'
    Abbey Hyde
    School of Nursing and Midwifery, University College Dublin, National University of Ireland
    Nurs Inq 12:66-77. 2005
    ..The article concludes by problematising communicative action within the context of nursing practice...
  43. ncbi Ethical issues in participatory action research
    Päivi Löfman
    South Carelia Polytechnic, Lappeenranta, Finland
    Scand J Caring Sci 18:333-40. 2004
    ..It is particularly important in PAR to proceed according to the participants, and to involve them from the beginning of the process, in order to insure the equal balance of power between participants and researcher...
  44. ncbi Freedom and resistance: the phenomenal will in addiction
    Mary Tod Gray
    East Stroudsburg University, East Stroudsburg, PA 18301, USA
    Nurs Philos 8:3-15. 2007
  45. ncbi Is compassion essential to nursing practice?
    Marit Helene Hem
    Section for Health Science, Faculty of Medicine, University of Oslo, Norway
    Contemp Nurse 17:19-31. 2004
    ..The study shows that compassion is a radical concept with a potential to promote greater respect for patients' dignity...
  46. ncbi Let's talk nursing part 3: re-claiming caring
    Kym Volp
    Qld Nurse 25:6-7. 2006
  47. ncbi Cultural differences with end-of-life care in the critical care unit
    Jessica Doolen
    University of Nevada, Las Vegas School of Nursing, NV 89154 3018, USA
    Dimens Crit Care Nurs 26:194-8. 2007
    ..Knowledge of these cultural differences is fundamental if critical care nurses wish to provide appropriate and culturally competent information regarding end-of-life decisions...
  48. ncbi Questionable requirement for consent in observational research in psychiatry
    Marit Helene Hem
    Section for Health Science, Faculty of Medicine, University of Oslo, PO Box 1153 Blindern, NO 0318 Oslo, Norway
    Nurs Ethics 14:41-53. 2007
    ..The article shows that the alternative solution is not simple but must emphasize the researcher's ability to doubt and be based on an awareness of the researcher's fallibility...
  49. ncbi The care encounter: pondering caring, honest communication and control
    Anthony G Tuckett
    School of Nursing, The University of Queensland, Ipswich, Queensland, Australia
    Int J Nurs Pract 11:77-84. 2005
    ....
  50. ncbi Narrative ethics in nursing for persons with intellectual disabilities
    Herman P Meininger
    Vrije Universiteit Amsterdam, Gerrit Achterbergstraat 25, 3947 ME Langobroek, The Netherlands
    Nurs Philos 6:106-18. 2005
    ..The 'epiphany' of this essential moment of recognition, insight and engagement cannot, however, be brought about by methodology...
  51. ncbi An analysis of the concept dignity
    Vanessa Lynne Griffin-Heslin
    A and E Department, AMNCH, Tallaght, Dublin 24, Republic of Ireland
    Accid Emerg Nurs 13:251-7. 2005
    ..2000. Why are we waiting? Emergency Nurse 8 (1), 173-180]. However, patients' dignity should be maintained at all times and health care workers need to recognise that they themselves need dignity in order to promote dignity in others...
  52. ncbi Professional nurses' attitudes towards providing termination of pregnancy services in a tertiary hospital in the north west province of South Africa
    N E Mokgethi
    Department of Health Studies, University of South Africa
    Curationis 29:32-9. 2006
    ..Despite the legalisation of TOPs, these services remained stigmatised. Professional nurses did not want to work in these services and also did not want to be associated with them...
  53. ncbi The experience of living with faecal incontinence
    Mary Wilson
    Specialist Services for Bladder and Bowel Health, Westwood Hospital, East Yorkshire
    Nurs Times 103:46-9. 2007
  54. ncbi Psychiatric nurses' ethical stance on cigarette smoking by patients: determinants and dilemmas in their role in supporting cessation
    Sharon Lawn
    Division of Mental Health Flinders Medical Centre now known as Southern Adelaide Health Service, Flinders University of South Australia, South Australia, Australia
    Int J Ment Health Nurs 15:111-8. 2006
    ..The findings suggest that psychiatric nurses can be more effective in the primary care role of supporting patients' smoking cessation if they receive adequate institutional support to do so...
  55. ncbi The 'little extra' that alleviates suffering
    Maria Arman
    Karolinska Institute, Section of Nursing, SE 141 83 Huddinge, Sweden
    Nurs Ethics 14:372-84; discussion 384-6. 2007
    ..The fact that 'little things' have the power to preserve dignity and make patients feel they are valued offers hope. Witnessing benevolent acts also paves the way for both patients and caregivers to increase their understanding of life...
  56. ncbi Tasks and routines in 21st century nursing: student nurses' perceptions
    Patricia Pearcey
    Faculty of Health and Social Care, University of Hull, East Yorkshire
    Br J Nurs 16:296-300. 2007
    ..Indeed, tasks and routines are what seemed to structure the work of nurses, with little evidence of holistic, patient-centred care occurring clinically...
  57. ncbi Nursing in a technological environment: nursing care in the operating room
    Rosalind Bull
    Department of Rural Health, University of Tasmania, Launceston, Tasmania, Australia
    Int J Nurs Pract 12:3-7. 2006
    ..This paper uses selected findings from the study to explore the ways in which nurses in theatre interpret their role in terms of caring in a technological environment...
  58. ncbi Experiences of self-determination by older persons living in sheltered housing
    Ulla W Hellström
    Tbc and Nordic School of Public Health, Gothenburg, Sweden and Age Institute, Helsinki, Finland
    Nurs Ethics 14:413-24. 2007
    ..In sheltered housing, more attention should be paid to residents' self-determination and sense of value...
  59. ncbi Dimensions of professional labor support for intrapartum practice
    Donna J Sauls
    College of Nursing, Texas Woman s University, P O Box 425498, Denton, TX 76204 5498, USA
    J Nurs Scholarsh 38:36-41. 2006
    ..To define and describe the dimensions of Professional Labor Support (PLS)...
  60. ncbi Knowing how to play the game: hospitalized substance abusers' strategies for obtaining pain relief
    Betty D Morgan
    University of Massachusetts Lowell School of Health and Environment, Department of Nursing, Lowell, Massachusetts 01854, USA
    Pain Manag Nurs 7:31-41. 2006
    ..Participants had many suggestions about nursing actions that were helpful or not helpful in assisting them to obtain pain relief. Nursing practice, education, research, and policy implications were discussed...
  61. ncbi Long-term nursing care of elderly people: identifying ethically problematic experiences among patients, relatives and nurses in Finland
    Sari Teeri
    University of Turku, Turku and Satakunta Polytechnic, Pori, Finland
    Nurs Ethics 13:116-29. 2006
    ..This study provided no information on the prevalence of ethical problems. However, it is clear from the results that patient integrity warrants more attention in the nursing care of elderly patients...
  62. ncbi Ethical and cultural considerations in informed consent in Botswana
    Sheila Shaibu
    University of Botswana, Department of Nursing, Private Bag 00702, Gaborone, Botswana
    Nurs Ethics 14:503-9. 2007
    ..Ethical challenges that arose are discussed. The brokerage role of nurse educators and leaders in contextualizing western bioethics is emphasized...
  63. ncbi Virtue ethics: an approach to moral dilemmas in nursing
    E Arries
    School of Nursing, University of Johannesburg, Auckland Park
    Curationis 28:64-72. 2005
    ..Secondly I describe a story in which a moral dilemma is evident. Lastly I apply virtue ethics as an approach to this moral dilemma and in particular focusing on the virtues inherent in the nurse as moral agent in the story...
  64. ncbi Service-learning: an eye-opening experience that provokes emotion and challenges stereotypes
    Roberta Hunt
    College of St Catherine, St Paul, Minnesota 55105, USA
    J Nurs Educ 46:277-81. 2007
    ....
  65. ncbi Strategies used by clinical nurse specialists in "difficult" clinician-patient situations
    Zane Robinson Wolf
    La Salle University School of Nursing and Health Sciences, Philadelphia, PA, USA
    Clin Nurse Spec 21:74-84. 2007
    ..Respect for the patient and ability to focus on the issue at hand emerged in the highest reported strategies...
  66. ncbi Role conflict: appropriateness of a nurse researcher's actions in the clinical field
    Lesley Wilkes
    Wentworth Area Health Service University of Western Sydney, Australia
    Nurse Res 12:57-70. 2005
    ..Frameworks need to be discussed and debated so that neophyte researchers are well-prepared before they enter the field to conduct research...
  67. ncbi The challenges for nurses communicating with and gaining valid consent from adults with intellectual disabilities within the accident and emergency care service
    Margaret Sowney
    Magee Campus, Londonderry, UK
    J Clin Nurs 16:1678-86. 2007
    ..This paper reports the challenges experienced by nurses within accident and emergency departments in communicating with and gaining valid consent from adults with intellectual disabilities...
  68. ncbi Introductory engagement within the perinatal nursing relationship
    Lisa Sara Goldberg
    School of Nursing, Dalhousie University, 5869 University Avenue, Halifax, Nova Scotia, B3H 3J5, Canada
    Nurs Ethics 12:401-13. 2005
    ..The focus of attention in this article is to describe the theme of introductory engagement by way of a storied phenomenological text...
  69. ncbi Exploring the moral distress of registered nurses
    Patti Rager Zuzelo
    La Salle University and Albert Einstein Healthcare Network, Philadelphia, PA, USA
    Nurs Ethics 14:344-59. 2007
    ..The RNs requested further information on biomedical ethics, suggested ethics rounds, and requested a non-punitive environment surrounding the initiation of ethics committee consultations...
  70. ncbi On paternalism, autonomy and best interests: telling the (competent) aged-care resident what they want to know
    Anthony G Tuckett
    Senior Clinical Lecturer, School of Nursing, Faculty of Health Sciences, The University of Queensland, Ipswich, Queensland, Australia
    Int J Nurs Pract 12:166-73. 2006
    ..Finally, a very simple recommendation is proposed for determining and managing the (competent) aged-care resident's informational disclosure preferences: ask them...
  71. ncbi 'Faced' with responsibility: Levinasian ethics and the challenges of responsibility in Norwegian public health nursing
    Anne Clancy
    Harstad University College, Norway
    Nurs Philos 8:158-66. 2007
    ..Levinasian ethics can help nurses understand the importance of accepting that being a responsive carer can involve not only contentment in the predictable, but also the fear, worry, and uncertainty of the unpredictable...
  72. ncbi Ethical issues in caring for people with carotid artery rupture
    Theresa Frawley
    School of Nursing and Midwifery, The University of Dublin Trinity College, Dublin, Ireland
    Br J Nurs 15:100-3. 2006
    ..Respect for the autonomy of patients should be a guiding principle governing the conduct of decisions...
  73. ncbi Ethics in nursing homes: experience and casuistry
    Ashild Slettebø
    Faculty of Nursing, Oslo University College, Oslo, Norway
    Int J Nurs Pract 10:159-65. 2004
    ..We suggest that by using the method of experiences combined with casuistry in a more systematic way, nurses can develop acceptable solutions for difficult care situations in nursing homes...
  74. ncbi Paternalism in nursing and healthcare: central issues and their relation to theory
    William K Cody
    University of North Carolina at Charlotte, 9201 University City Blvd, Charlotte, NC 29922, USA
    Nurs Sci Q 16:288-96. 2003
    ....
  75. ncbi Registered nurses' lived experience of advocacy within a critical care unit: a phenomenological study
    Jeff Breeding
    Westmead Hospital, NSW
    Aust Crit Care 15:110-7. 2002
    ....
  76. ncbi Exceptional nontraditional caring practices of nurses
    Olive Yonge
    Faculty of Nursing, University of Alberta, Edmonton, Alberta, Canada
    Scand J Caring Sci 16:399-405. 2002
    ..The research has implications for the new emerging field of boundaries in professional relationships...
  77. ncbi The lived experience of nursing advocacy
    Robert G Hanks
    The University of Texas Medical Branch, Galveston, TX, USA
    Nurs Ethics 15:468-77. 2008
    ..The findings increase the body of knowledge surrounding nursing advocacy as practiced by nurses...
  78. ncbi Nurses' advocacy behaviors in end-of-life nursing care
    Karen S Thacker
    Alvernia College, 400 St Bernardine Street, Reading, PA 19607, USA
    Nurs Ethics 15:174-85. 2008
    ....
  79. ncbi Confirming older adult patients' views of who they are and would like to be
    Ingrid Randers
    Karolinska Institute, HM Queen Sophia University College of Nursing, Stockholm, Sweden
    Nurs Ethics 9:416-31. 2002
    ....
  80. ncbi Storied ethics: conversations in nursing care
    Carola Skott
    Sahlgrenska Academy at Goteborg University, Faculty of Health and Caring Sciences, Institute of Nursing, Box 457, 405 30 Goteborg, Sweden
    Nurs Ethics 10:368-76. 2003
    ..The need for making space in nursing for a continual learning conversation is expressed and in this I include writings of nursing theorists...
  81. ncbi Perceptions of nurses' caring behaviors by trauma patients
    Janice S Hayes
    University of Northern Colorado, USA
    J Trauma Nurs 14:187-90. 2007
    ..The average rating for the sample was 4.8. Patients receiving care through trauma services expressed an overall positive perception of caring from the nursing staff while there was room for improvement in some areas...
  82. ncbi Unable to answer the call of our patients: mental health nurses' experience of moral distress
    Wendy Austin
    Faculty of Nursing, 3rd Floor Clinical Sciences, University of Alberta, Edmonton, Alberta T6H 1C2, Canada
    Nurs Inq 10:177-83. 2003
    ..The metaphors of flashlight and hammer are used to elaborate nurses' possible responses to intolerable situations...
  83. ncbi Maintenance of patients' integrity in long-term institutional care
    Sari Teeri
    University of Turku, Turku, Finland
    Nurs Ethics 15:523-35. 2008
    ..Closer attention must be given to patients who are forgetful and unable to take part in decision making...
  84. ncbi Patient's self-determination in intensive care-from an action- and confirmation theoretical perspective. The intensive care nurse view
    Katarina E Meijers
    Intensive Care Unit, South Stockholm General Hospital, Stockholm, Sweden
    Intensive Crit Care Nurs 24:222-32. 2008
    ....
  85. ncbi Increased unintended patient harm in nursing practise as a consequence of the dominance of economic discourses
    K Heggen
    Faculty of Medicine, University of Oslo, Blinden, 0316 Oslo, Norway
    Int J Nurs Stud 41:293-8. 2004
    ..The challenge for nurses and the nursing profession is to develop strategies to refuse to give in to the dominance of economic interests over the need to prevent harm...
  86. ncbi Dementia diagnosis and disclosure: a dilemma in practice
    Catherine Monaghan
    School of Nursing and Midwifery, Queen s University Belfast, Medical Biology Centre, Belfast, UK
    J Clin Nurs 13:22-9. 2004
    ..This challenge can also give rise to conflict when professionals are torn between respecting autonomy, doing good and avoiding paternalism...
  87. ncbi Nursing with prisoners: the practice of caring, forensic nursing or penal harm nursing?
    M K Maeve
    Department of Community Nursing, Medical College of Georgia, Augusta, USA
    ANS Adv Nurs Sci 24:47-64. 2001
    ..Implications for nursing practice, research, and education are discussed...
  88. ncbi In their own words: oncology nurses respond to patient requests for assisted suicide and euthanasia
    M L Matzo
    Department of Health Sciences, New Hampshire Community Technical College, Manchester, NH, USA
    Appl Nurs Res 14:64-71. 2001
    ..This article describes the content analysis of those comments. Those oncology nurses who wrote have much to say about caring for patients at the end of life...
  89. ncbi Moral professional personhood: ethical reflections during initial clinical encounters in nursing education
    Chryssoula Lemonidou
    University of Athens School of Nursing, 123 Papadiamantopoulou Street, 11527 Athens, Greece
    Nurs Ethics 11:122-37. 2004
    ..The notions of empathy, caring and emotion were in evidence throughout the students' experience. Implications for practice and nurse education are discussed...
  90. ncbi Prevention of unethical actions in nursing homes
    Eva Merethe Solum
    Vestfold University College, Vestfold, Norway
    Nurs Ethics 15:536-48. 2008
    ..This theory has four basic requirements: communicative competence, equality, self-determination, and openness about motives...
  91. ncbi Ethical concerns: comparison of values from two cultures
    Peggy L Wros
    Linfield Good Samaritan School of Nursing, Linfield College, Portland, OR 97210, USA
    Nurs Health Sci 6:131-40. 2004
    ..Nurses in each country also hold unique values not found in the nursing practice of the other country. Understanding these commonalities and differences is critical for the development of global nursing ethics...
  92. ncbi Europa Uomo: the European Prostate Cancer Coalition
    Tom Hudson
    Europa Uomo, Men Against Cancer, Killiney, Dublin, Ireland
    Recent Results Cancer Res 175:267-71. 2007
    ..on awareness, early detection, optimal treatment, multi-professional care and, above all, quality of life and patient advocacy. In the majority of European countries prostate cancer is the most commonly diagnosed cancer affecting men ..
  93. pmc Developing effective chronic disease interventions in Africa: insights from Ghana and Cameroon
    Ama de-Graft Aikins
    Department of African Studies, University of Dschang, Dschang, Cameroon
    Global Health 6:6. 2010
    ..We discuss the challenge of developing effective primary and secondary prevention to tackle Africa's chronic disease epidemic through in-depth case studies of Ghanaian and Cameroonian responses...
  94. ncbi Changing social policy: Grassroots to legislation
    Liz Lemiska
    Middlesex Hospital, Middletown, Connecticut, USA
    J Wound Ostomy Continence Nurs 29:149-63. 2002
    ..The collaboration that occurred was patient advocacy at its best...
  95. ncbi Issues in genetic testing for ultra-rare diseases: background and introduction
    David H Ledbetter
    Department of Human Genetics, Emory University, Atlanta, Georgia 30322, USA
    Genet Med 10:309-13. 2008
    ..community involvement, with stakeholders from appropriate federal agencies, professional societies, patient advocacy groups as well as clinical geneticists and clinical genetics laboratory experts...
  96. ncbi Hormonal therapies for individuals with intersex conditions: protocol for use
    Garry L Warne
    Centre for Hormone Research, Royal Children s Hospital, Melbourne, Victoria, Australia
    Treat Endocrinol 4:19-29. 2005
    ..current medical practices relating to intersex conditions has been waged for the last 7 years between certain patient advocacy organizations and the medical profession, and is expected to continue for some time...
  97. ncbi Patient advocacy and advance care planning in the acute hospital setting
    Marion Seal
    The Queen Elizabeth Hospital, Adelaide, South Australia, Australia
    Aust J Adv Nurs 24:29-36. 2007
    The aim of this study was to explain the role of patient advocacy in the Advance Care Planning (ACP-ing) process...
  98. ncbi Palliative care. Some organisational considerations
    A Welshman
    Sue Ryder Foundation, Rome, Italy
    Minerva Anestesiol 71:439-43. 2005
    ..Concerns regarding under treatment of chronic pain have captured the attention of patient advocacy groups, policy makers and scientific organisations...
  99. ncbi A survey of phlebotomy among persons with hemochromatosis
    S M McDonnell
    Division of Nutrition and Physical Activity, Centers for Disease Control and Prevention, Atlanta, Georgia 30303, USA
    Transfusion 39:651-6. 1999
    ..The patterns of therapeutic phlebotomy and the magnitude of charges in persons with hemochromatosis were surveyed...
  100. ncbi Undertaking the role of patient advocate: a longitudinal study of nursing students
    Insaf Altun
    Kocaeli University, Turkey
    Nurs Ethics 10:462-71. 2003
    b>Patient advocacy has been claimed as a new role for professional nurses and many codes of ethics for nurses state that they act as patient advocates. Nursing education is faced with the challenge of preparing nurses for this role...
  101. ncbi Clinician-patient interactions about requests for physician-assisted suicide: a patient and family view
    Anthony L Back
    Veterans Affairs Puget Sound Health Care System, 1660 S Columbian Way S 111, Seattle, WA 98108, USA
    Arch Intern Med 162:1257-65. 2002
    ..Clinician responses to PAS requests, however, have only been described using data obtained from clinicians...

Research Grants70

  1. Intravenous Protein Therapy for Myotonic Dystrophy Type 1
    Richard Weisbart; Fiscal Year: 2010
    ..the commitment from the biotechnology industry, and the expertise and resources of the DM1 scientific and patient advocacy community...
  2. Primary Immune Deficiency Treatment Consortium Annual Scientific Meeting
    Luigi Daniele Notarangelo; Fiscal Year: 2013
    ..major centers in North America involved in the treatment of these disorders, as well as biostatisticians and Patient Advocacy Groups...
  3. Lysosomal Disease Network
    Chester B Whitley; Fiscal Year: 2013
    ..The Lysosomal Disease Network brings together more than 500 researchers and clinicians across the country, Patient Advocacy Groups (PAG), and other interested partners, and has generated a synergistic research and educational ..
  4. Childhood Liver Disease Research and Education Network (CHiLDREN) - UCSF (CC)
    Philip Rosenthal; Fiscal Year: 2013
    ..7) Expansion to include other diseases of cholestasis in children with industry and patient advocacy group support. 8) Continue to provide training opportunities for investigators in pediatric liver disease...
  5. Rare Diseases Clinical Research Consortia (RDCRC) for the RDCR Network
    Mark L Batshaw; Fiscal Year: 2013
    ..The consortium works closely with the National Urea Cycle Disorders Foundation, the patient advocacy organization for urea cycle disorders and has collaboration with industry to develop innovative therapies for ..
  6. The 8th Annual Cerebral Cavernous Malformations (CCM) Scientific Meeting
    AMY LEE AKERS; Fiscal Year: 2012
    ..Facilitating these advancements and collaborations is a priority of Angioma Alliance - the patient advocacy organization for those affected by CCM...
  7. Protecting Privacy in Health Research
    FRED CATE; Fiscal Year: 2010
    ..This proposal assembles a blue-ribbon panel of experts in medical research, privacy, law, ethics, and patient advocacy to flesh out the IOM's innovative proposal and to provide the details necessary for its practical ..
  8. Comorbid Chronic Pain Conditions - Mechanisms, Diagnosis and Treatments
    Allen W Cowley; Fiscal Year: 2011
    ..The meeting will engage key leaders and representatives from funding and patient advocacy organizations who will develop recommendations to advance research in this field...
  9. What a Difference an X Makes: The State of Women's Health
    Christine Carter; Fiscal Year: 2013
    ..audience of researchers, clinicians and allied health care professionals from various academic institutions, patient advocacy groups, federal agency employees, representatives of the pharmaceutical industry, media reporters, and ..
  10. North American Mitochondrial Disease Consortium (NAMDC)
    JOHN L THOMPSON; Fiscal Year: 2013
    ..Only through a consortium, acting in close collaboration with a patient advocacy group, the United Mitochondrial Disease Foundation (UMDF) can we address these complex diseases...
  11. Social Networking and Personal Genomics: Emerging Issues for Health Research
    Sandra Soo Jin Lee; Fiscal Year: 2012
    ..members of social networks, including family members, friends, health professionals and acquaintances, patient advocacy organization, and biomedical researchers. 3...
  12. Immune Mediated Disorders After Allogeneic Hematopoietic Cell Transplants (HCT)
    Stephanie J Lee; Fiscal Year: 2010
    ..We collaborate with three patient advocacy organizations to reach out to patients, families, and physicians.
  13. Immune Mediated Disorders After Allogeneic Hematopoietic Cell Transplants (HCT)
    Stephanie J Lee; Fiscal Year: 2013
    ..We collaborate with three patient advocacy organizations to reach out to patients, families, and physicians.
  14. Urea Cycle Disorders Satellite Symposium: 11th International Meeting
    BRENDAN HL LEE; Fiscal Year: 2012
    ..This symposium implements the commitment of the National Urea Cycle Disorders Foundation, the only patient advocacy organization in the world focusing solely on urea cycle disorders (UCD), to initiate and support symposia to ..
  15. Urea Cycle Disorders Satellite Symposium to the 12th ICIEM
    Marshall L Summar; Fiscal Year: 2013
    ..for Intoxication Type Metabolic Diseases (E-IMD), and the National Urea Cycle Disorders Foundation (NUCDF) patient advocacy group...
  16. Proteome Characterization Center: A Genoproteomics Pipeline for Cancer Biomarkers
    Zhen Zhang; Fiscal Year: 2013
    ..experimental design, metrology/standards, technology optimization, assay construction, project management and patient advocacy. The plan is to connect genomics with proteomics (genoproteomics)...
  17. 9th International Myotonic Dystrophy Consortium Meeting
    Richard T Moxley; Fiscal Year: 2013
    ..there will be patient-oriented sessions to promote discussion among patients, care-givers, representatives of patient advocacy groups, clinicians, and investigators...
  18. 8th International Myotonic Dystrophy Consortium Meeting
    Richard T Moxley; Fiscal Year: 2011
    ..there will be patient-oriented sessions to promote discussion among patients, care-givers, representatives of patient advocacy groups, clinicians, and investigators...
  19. Translational Science in Integrative Oncology: From Bedside, to Bench, to Best P
    Suzanna M Zick; Fiscal Year: 2013
    ..and knowledge translation strategies;a public lecture on mindfulness practices in integrative oncology;patient advocacy and trainee streams;and 6 experiential workshop focused on learning and practicing the latest evidence-based ..
  20. SPORE: Dana-Farber/Harvard SPORE in Breast Cancer
    Eric P Winer; Fiscal Year: 2013
    ..It will lead efforts in planning and communication. It also houses the Patient Advocacy Committee arid will oversee the Developmental Research Program (DRP) and the Career Development Program (CDP) ..
  21. Third International Meeting on Genetic Syndromes of the Ras/MAPK Pathway
    Bruce R Korf; Fiscal Year: 2013
    ..On the final day, scientists and clinicians will meet with patient advocacy groups to discuss findings reported at the meeting...
  22. The role of social factors in cardiovascular risk behaviors disparities
    LAURA SAMUEL; Fiscal Year: 2012
    ..Moreover, these findings may be used to improve patient advocacy and shape policies to address health disparities at a societal level.
  23. PESBART: Effects of Physical Environment and Stress in Blacks in Relation to Asth
    Elliot Israel; Fiscal Year: 2013
    ..with expertise in areas of environmental epidemiology, population genetics, clinical practice and patient advocacy;and 4) perform a Pilot study that will assess the completeness and accuracy of the geographic data elements ..
  24. Nervous System Channelopathies: Pathogenesis and Treatment
    Robert C Griggs; Fiscal Year: 2010
    ..of Neurologic Channelopathies (CINCH) has mutually supportive relationships with US and international patient advocacy groups: the MDA's of the US, Canada, and UK;the National Ataxia Foundation;and the international ..
  25. Conference on Clinical Research for Rare Diseases
    Peter A Merkel; Fiscal Year: 2012
    ..orphan products, 5) working with industry, 6) conflict of interest in rare diseases research, 7) the roles of patient advocacy groups in rare diseases research;;and 8) career advice...
  26. Biomarkers for Therapy of FSHD (U54)
    Charles P Emerson; Fiscal Year: 2013
    ..An Administrative Core will partner with our primary patient advocacy group, the FSH Society, to organize regular WebX conferencing data-sharing meetings, FSHD workshops, patient-..
  27. CONCERT-Clinical Effectiveness Research (CONCERT-CER)
    Richard A Mularski; Fiscal Year: 2010
    ..amp;Medicaid Services, private health plans, the Joint Commission, quality improvement organizations, patient advocacy groups (e.g., COPD Foundation), and sponsors (AHRQ, NHLBI)...
  28. Region V-East HTC Network for the Prevention of Bleeding Disorders Complications
    IVAN C HARNER; Fiscal Year: 2010
    ..with chronic diseases, including linkages with other specialists, community based social services and patient advocacy and support...
  29. Porphyria Rare Disease Clinical Research Consortium (RDCRC)
    Robert J Desnick; Fiscal Year: 2013
    ..of senior porphyria experts at five regional centers, the American Porphyria Foundation (APF), the porphyria patient advocacy and support group, and biopharmaceutical companies improving and/or developing novel therapies...
  30. Childhood Interstitial &Diffuse Lung Disease Scientific Conference
    James S Hagood; Fiscal Year: 2012
    ..rare diseases have recently been catalyzed by the efforts of multidisciplinary teams spurred on by passionate patient advocacy groups...
  31. Vasculitis Clinical Research Consortium
    Peter A Merkel; Fiscal Year: 2013
    ..Each of these diseases are consider "orphan" diseases. Additionally, partnership with patient advocacy groups has been a critical component to the success of t he VCRC...
  32. Advancing Clinical Research in Primary Glomerular Diseases (UM1)
    Ali G Gharavi; Fiscal Year: 2013
    ..Moreover, our proposal has a considerable support from the industry, FDA, and patient advocacy groups.
  33. A regionally coordinated intervention to reduce racial disparities in access to k
    Rachel E Patzer; Fiscal Year: 2013
    ..patients, dialysis facility staff and providers, transplant centers, quality improvement organizations, and patient advocacy organizations...
  34. Summit on Cancer Outcomes, Quality, and Comparative Effectiveness Research
    Robert S Hauser; Fiscal Year: 2012
    ..health policy communities, including health care providers specializing in cancer care, clinical researchers, patient advocacy groups, federal policy makers and health insurance companies...
  35. Electronic Location Reporting for Individuals With Alzheimers Disease and other D
    SUMAN SARIPALLI; Fiscal Year: 2012
    ..A parallel (non-SBIR) effort is underway to build relationships with, and educate patient advocacy groups and user groups about this system, as part of the commercialization strategy...
  36. Oncofertility Consortium Annual Conference
    Teresa K Woodruff; Fiscal Year: 2013
    ..fields of basic science, reproductive endocrinology, cell biology, social science, ethics, education, law, patient advocacy and religion...
  37. Translational Neuromuscular Research, Diverse Diseases, Convergent Themes
    Robert C Griggs; Fiscal Year: 2011
    ..will bring senior investigators, representatives of pharma, NIH program staff, and foundation and patient advocacy representatives together with junior/trainee investigators...
  38. Genetic Research &the Navajo Nation: Context of &Attitudes to the Moratorium
    NANIBAA apos A GARRISON; Fiscal Year: 2012
    ..including the meaning of individual informed consent, community consent and engagement, the advent of patient advocacy and the experiences of individuals with rare diseases or common diseases like Type 2 Diabetes...
  39. SPORE IN LUNG CANCER
    Eric B Haura; Fiscal Year: 2012
    ..B) Clinical Trials &Biostatistics Core (Simon, Schell &Bepler) C) Administration &Patient Advocacy Core (Bepler, Cress &Quinn). The SPORE also has Developmental Research &Career Development Programs...
  40. Neurological Emergencies Treatment Trials (NETT) Network Clinical Site Hubs
    MICHELLE HELEN BIROS; Fiscal Year: 2013
    ..We engage at least 30 clinician investigators at these sites. We partner with state patient advocacy groups and include education and clinical outreach as well as research in our mission...
  41. Treatment Strategies for Neuromuscular Diseases: The Challenge of Recruitment
    Robert C Griggs; Fiscal Year: 2010
    ..will bring senior investigators, representatives of pharma, NIH program staff, and foundation and patient advocacy representatives together with junior/trainee investigators...
  42. Rocky Mountain Network for Neuroscience Clinical Studies (RMNNCS)
    TIMOTHY LEE VOLLMER; Fiscal Year: 2013
    ..This will be collaboration between the RMNNCS, community-based neurologists and community-based patient advocacy groups focused on neurological disease from throughout the Rocky Mountain region...
  43. A Plan to use Sanford health Patient Complaints to Promote Safety/Reduce Claims
    WENDELL W HOFFMAN; Fiscal Year: 2010
    ..units at high risk;(2) assess SH's overall infrastructure-related readiness to adopt the Vanderbilt Patient Advocacy Reporting System (PARS(R)) program for both physicians and hospital units;(3) identify and rectify gaps, if ..
  44. Glycosaminoglycans For IC Pathophysiology and Prognosis
    Vinata Lokeshwar; Fiscal Year: 2005
    Despite superb efforts of patient advocacy groups, our insight into the etiology, diagnosis and treatment for interstitial cystitis (IC) is still inadequate...
  45. Eliciting Patient Experiences to Augment Public Reports on Health Care Quality
    Mark J Schlesinger; Fiscal Year: 2013
    ..team, with guidance from an advisory board composed of representatives from community coalitions, patient advocacy programs and organizations representing consumers...
  46. MCAV in Organ-Confined Bladder CA based on p53 Status
    Richard Cote; Fiscal Year: 2006
    ..4) Institution of the patient advocacy program, the first for bladder cancer. (5) The 5th annual investigator's meeting took place May 2002...
  47. The 8th Conference on the Molecular Biology of Hearing &Deafness
    Allen F Ryan; Fiscal Year: 2013
    ..6. To provide outreach to patients, patient advocacy groups, clinicians and schools in the local area, for education in the genetics of deafness and hearing ..
  48. IMPROVEMENT SCIENCE SUMMIT: A RESEARCH METHODS CONFERENCE
    Kathleen R Stevens; Fiscal Year: 2011
    ....
  49. IMPROVEMENT SCIENCE SUMMIT: RESEARCH METHODS TO TRANSFORM HEALTHCARE
    Kathleen R Stevens; Fiscal Year: 2012
    ....
  50. Novel Molecular Mechanisms of Neuromuscular Disease: Implications for Therapy
    Robert C Griggs; Fiscal Year: 2013
    ..investigators, representatives of pharma, National Institutes of Health program staff, and foundation and patient advocacy representatives together with junior/trainee investigators...
  51. Clinical Services for World Trade Center Responders
    Benjamin J Luft; Fiscal Year: 2010
    ..Promote access to care and patient advocacy through outreach, education and community involvement.
  52. Scientific and Medical Conference about Barth syndrome
    Matthew J Toth; Fiscal Year: 2012
    ..b>Patient advocacy groups, like the Barth Syndrome Foundation Inc...
  53. Parenthood after Cancer
    Leslie Schover; Fiscal Year: 2004
    ..children born to cancer survivors; the implications of inherited cancer syndromes for childbearing decisions; patient advocacy efforts to overcome barriers of knowledge, finance, and access to care; patient education needs; and ..
  54. Electronic Location Reporting for Individuals With Cognitive Disabilities
    SUMAN SARIPALLI; Fiscal Year: 2013
    ..A parallel (non-SBIR) effort is underway to build relationships with, and educate patient advocacy groups and user groups about this system, as part of the commercialization strategy.
  55. Bone Marrow Failure Scientific Symposium
    Jaroslaw Maciejewski; Fiscal Year: 2004
    ..biology and immunology; epidemiologists, and academic clinicians, under the auspices of an academic center, a patient advocacy organization, and the NIH...
  56. A Practice-Based Research Network for Improvement Science
    Kathleen R Stevens; Fiscal Year: 2010
    ....
  57. Clinical Research for Rare Diseases: Opportunities, Challenges, and Solutions
    Peter Merkel; Fiscal Year: 2007
    ..4) use of demographic and registry data, 5) pathways for developing orphan products, and 6) working with patient advocacy groups and with industry...
  58. Nervous System Channelopathies: Pathogenesis & Treatment
    ROBERT GRIGGS; Fiscal Year: 2005
    ..Study investigators have strong links with the patient advocacy organizations focused on these rare disorders: the Periodic Paralysis Association, the National Ataxia ..
  59. Pulmonary Alveolar Proteinosis Research Conference
    Bruce Trapnell; Fiscal Year: 2005
    ..outcome of PAP 2004 was initiation of the PAP Foundation, a patient run, nonprofit organization dedicated to patient advocacy, education and research support for PAP...
  60. Distrust, regulation, and alcohol disclosure
    Suzanne McMurphy; Fiscal Year: 2006
    ..and state legislatures, insurance and managed care organizations, professional and medical associations and patient advocacy groups...
  61. CONFERENCE ON MOLECULAR BIOLOGY OF HEARING AND DEAFNESS
    Allen Ryan; Fiscal Year: 2009
    ..can lead to diagnostics and therapeutics for the treatment of hearing disorders;and 5) provide outreach to patient advocacy groups and schools in the Boston area, with education on the genetics of deafness and hearing research...
  62. Animal Models in Type 1 Diabetes and Multiple Sclerosis
    Matthias von Herrath; Fiscal Year: 2006
    ..Additionally, we expect that this symposium will be of interest to junior faculty working in the areas of autoimmune disease research, as well as patient advocacy groups. [unreadable] [unreadable] [unreadable]
  63. Joint and Muscle Dysfunction of Temporomandibular Joint
    Allen Cowley; Fiscal Year: 2002
    ..Since little research had explored these problems, in May of 2000 a national patient advocacy group, The TMJ Association, organized a meeting to assess the current state of the science and provide ..
  64. Patient safety self-advocacy in patient-centered care
    Nancy Elder; Fiscal Year: 2002
    ..medical errors and patient safety will be examined in light of identified themes, and a model-based set of patient advocacy training guidelines will be devised...
  65. Patient Advocacy Summit: Patients at the Center of Care
    Jo Anne Earp; Fiscal Year: 2004
    ..at Chapel Hill School of Public Health proposes to host a national conference for up to 100 people on patient advocacy from a public health perspective. It will take place in Chapel Hill, North Carolina, from March 16-18, 2005...
  66. COMMUNITY GENETICS AND ETHICS PROJECTS
    David Yandell; Fiscal Year: 2000
    ..nationally, through formal presentations and informal networking to colleagues in genetics, ethics, the law, patient advocacy groups and community-based discussion groups; and create assessment tools, a compendium of relevant materials,..
  67. International Conference on Malignant Bowel Obstruction
    Robert Krouse; Fiscal Year: 2004
    ..palliative medicine, surgical oncology, gastroenterology, major consortium research, medical ethics, and patient advocacy/cancer survivors in Pasadena, California, on November 12-13, 2004...
  68. International Conference on the Non-Dystrophic Myotonias
    RICHARD BAROHN; Fiscal Year: 2007
    ..The CINCH investigators are working closely with patient advocacy organizations, with General Clinical Research Centers, and with both the NINDS and the ORD to make NDM a ..
  69. Cong Intl. Soc Vascular Behavioral & Cognitive Disorders
    ROBERT FRIEDLAND; Fiscal Year: 2005
    ..of various brain disorders, as well as to serve as a vehicle for the dissemination of this information, patient advocacy and training of researchers...
  70. A Systems Approach to the Understanding of TMJ as a Complex Disease
    Allen Cowley; Fiscal Year: 2006
    ..had explored these problems, in the years 2000, 2002, and 2004 The TMJ[unreadable] Association, a national patient advocacy organization, planned and organized scientific meetings (cosponsored[unreadable] by agencies of the NIH) to ..