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References

  • 1
    van Santvoort M. Disability in Europe: Policy, Social Participation and Subjective Well-being. PhD Thesis, Rijks Universiteit Groningen, 2009.
  • 2
    Broerse JEW, van der Ham L, van veen S, Van Tulder M. Inventarisatie patiëntenparticipatie bij richtlijn ontwikkeling. VU Amsterdam: Athena instituut, Rapportage 1e fase, ZonMw (in press), 2009.
  • 3
    Caron-Flinterman F, Broerse JEW, Bunders JFG. The experiential knowledge of patients: a new resource for biomedical research?Social Science and Medicine, 2005; 60: 25752584.
  • 4
    Stewart R, Oliver S. A Systematic Map of Studies of Patients’ and Clinicians’ Research Priorities. London, UK: James Lind Alliance, 2008.
  • 5
    Abma TA. Patient participation in health research. Research with and for people with spinal cord injuries. Qualitative Health Research, 2005; 15: 119.
  • 6
    Abma TA. Patients as partners in health research. Evaluation and the Health Professions, 2006; 29: 424439.
  • 7
    Abma TA, Nierse C, Widdershoven GAM. Patients as research partners in responsive research. Methodological notions for collaborations in research agenda setting. Qualitative Health Research, 2009; 19: 401415.
  • 8
    Abma TA, Broerse J. Patient participation as dialogue: setting research agendas. Health Expectations, 2010; 13: 160173.
  • 9
    Herxheimer A. The rights of the patient in clinical research. The Lancet, 1988; 8620: 11281130.
  • 10
    Arnstein SR. ‘A ladder of citizen participation’. Journal of the American Institute of Planners, 1969; 35: 216224.
  • 11
    van de Bovenkamp HM, Trappenburg MJ, Grit KJ. Patient participation in collective healthcare decision making: the Dutch model. Health Expectations, 2010; 13: 7385.
  • 12
    Nierse C, Abma TA. Developing voice and empowerment: the first step towards a broad consultation in research agenda setting. 2011, Journal of Intellectual Disability Research, 2011; 55: 411421.
  • 13
    Baur V, Abma TA, Widdershoven GAM. Participation of older people in evaluation: mission impossible?Evaluation and Program Planning, 2010; 33: 238245.
  • 14
    Oliver S, Clarke-Jones L, Rees R et al. Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach. Health Technology Assessment, 2004; 8: 1148.
  • 15
    Schipper K, Abma TA, Nierse C, van Zadelhoff E, van de Griendt J, Widdershoven GAM. What does it mean to be a research partner? An ethnodrama. Qualitative Inquiry, 2010; 16: 501510.
  • 16
    Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database of Systematic Reviews, 2006; 3: CD004563. DOI: 10.1002/14651858.CD004563.pub2.
  • 17
    Centre for Reviews and Dissemination. CRD’s Guidance for Undertaking Reviews in Healthcare, January 2009; University of York, 2008: 217242. ISBN 978-1-900640-47-3.
  • 18
    Teunissen GJ, Abma TA. Derde partij: tussen droom en daad. Een verkennend onderzoek naar de patiëntenpartij en -criteria voor onderzoek, beleid en kwaliteit bij overheden en zorginstellingen. Tijdschrift voor Sociale gezondheidszorg, TSG 2010 nr 4, 2010: 189196.
  • 19
    Joanna Briggs Institute. Reviewers’ Manual: 2008 Edition, Lockwood C (ed.). Australia: Royal Adelaide Hospital, 2008, ABN: 80 230 154 545.
  • 20
    Lithuania. Law on the rights of patients and compensation of the damage to their health, amended 1998, Vilnius, English translation, Number I-1562, 1996.
  • 21
    WHO-e. General Health Related Patient Support Groups. 2009, Available at: http://www.who.int/genomics/public/patientsupport/enprint.html, status per, accessed 1 September 2009.
  • 22
    Herxheimer A, McPherson A, Miller R, Shepperd S, Yaphe J, Ziebland S. Database of patients’ experiences (DIPEx): a multi-media approach to sharing experiences and information. The Lancet, 2000; 355: 15401543.
  • 23
    Bal R, van de Lindeloof A. Publieksparticipatie bij pakketbeslissingen. Leren van buitenlandse ervaringen. In: Zicht op zinnige en duurzame zorg, RVZ, Zoetermeer, 2005.
  • 24
    Grit K, van der Bovenkamp H, Bal R. De positie van de zorggebruiker in een veranderend stelsel. Rotterdam: Instituut voor Beleid en Management van de Gezondheidszorg (BMG), Erasmus MC, 2008: 5455.
  • 25
    van Lindert H, Friele R, Sixma H. Wat vinden migranten belangrijk in de huisartsenzorg? Utrecht: De verlanglijst van migranten, Nivel, 2000.
  • 26
    Uiters E, van Dijk L, Deville W, Foets M, Spreeuwenberg P, Groenewegen PP. Ethnic Minorities and Prescription Medicine; Concordance between Self-reports and Medical Records. Utrecht: Nivel, 2006.
  • 27
    HFE. Health First Europe: HFE Health Survey 2007, 77 EU Opinion Leaders’ Views on the Future of Health. Brussels: HFE, 2007http://www.healthfirsteurope.org, accessed 1 December 2009.
  • 28
    Schalock R, Alonso MAV. Handbook on Quality of Life for Human Service Practitioners. Washington, DC: American Association on Mental Retardation, 2002, ISBN 0-940898-77-2.
  • 29
    WHO-a. Marcial Velasco Garrido, Finn Børlum Kristensen, Camilla Palmhøj Nielsen, Reinhard Busse Health Technology Assessment and Health Policy-making in Europe, Current Status, Challenges and Potential, EU Observatory study series nr. 14, Copenhagen, ISBN 978 92 890 4293 2, 2008: 2326.
  • 30
    AF. Arthritis Foundation: Arthritis Prevention Control and Cure Act of 2009, H.R.1210/S.984. Washington, DC: Arthritis Foundation, http://www.arthritis.org , 2009, accessed 1 December 2009.
  • 31
    EPF-a. Toolkit for patient Organisations on meaningful patient involvement. Patients adding value to policy, projects and services, European Patients’ Forum, Brussels: EPF, 2009.
  • 32
    Patients Association. (1) A guide to using your patient power; (2) Access to your medical records, a patients guide. Harrow, Middlesex, UK, http://www.patients-association.com/advice-publications/269 and.../326, 2009, accessed 1 December 2009.
  • 33
    Patient UK. Most Requested Support Groups. Leeds, UK, http://www.patient.co.uk , 2009, accessed 1 December 2009.
  • 34
    WHO-b. Everybody’s Business, Strengthening Health Systems to Improve Health Outcomes, WHO’s framework for action, ISBN 978 92 4 159607 7. Geneva: WHO, 2007: 20.
  • 35
    WHO-c. The International Classification of Functioning, Disability and Health (ICF), Geneva, Dutch translation, WHO-FIC collaboration centre in the Netherlands, RIVM, 2002, Bilthoven, the Netherlands, 2001.
  • 36
    Sandor J. Ombudspersons and patients’ rights in Hungary. In: Mackenny S, Fallberg L (eds), Protecting Patients’ Rights? A Comparative Study of the Ombudsman in Healthcare. Oxon, UK: Radcliffe Medical Press, ISBN 1857758706. Chapter 4, 2004: 5576.
  • 37
    Wet betreffende de rechten van de patiënt, 22 augustus 2002, nr. 2002022737, Sociale zaken, volksgezondheid en leefmilieu./2004, Wet tot wijziging van de wet van 22 augustus 2002 betreffende de rechten van de patiënt – pijnbestrijding – palliatieve zorg, 24 November 2004, nr. 2005022587, Belgium, 2002/2004.
  • 38
    Brazinov A, Jansk E, Jurkovi R. Implementation of patients’ rights in the Slovak Republic. Eubios Journal of Asian and International Bioethics, 2004; 14, 9091.
  • 39
    Patientenrechte in Deutschland – Charta am 16.10.2002 vorgelegt, Pressemitteilung des Bundesjustizministeriums Nr. 54/02 vom 16. Oktober 2002, Deutschland, 2002.
  • 40
    Wiederholt M (eds), Bendixen C, Dybjaer L, Storgaard Bonfils I. Danish disability policy, equal opportunities through dialogue, The Danish Disability Council. Kobenhavn, Denmark: Det Centrale Handicaprad, ISBN 87-90985-14-1, 2002, accessed 1 December 2009
  • 41
    Heart and Stroke Foundation. http://www.heartandstroke.com , 2009, accessed 1 December 2009.
  • 42
    Al-Anon. Al-Anon/Alateen World Service Office, http://www.al-anon.alateen.org , 2009.
  • 43
    Canadian Diabetes Association. http://www.diabetes.ca , 2009, accessed 1 December 2009.
  • 44
    Catsad. Canadian Association for Tay-Sachs and Allied Diseases, http://www.Catsad.ca , 2009, accessed 1 December 2009.
  • 45
    ALA. American Lung Association: Cultural Diversity Policy. Washington, DC: ALA, http://www.lungusa.org , 2004, accessed 1 December 2009.
  • 46
    NIA. National Institute on Aging: Caring for a Person with Alzheimer Disease. ADEAR Centre, http://www.nia.nih.gov2009, accessed 1 December 2009.
  • 47
    ALF. American Liver Foundation: Patient Toolkit. http://www.Liverfoundation.org , 2009, accessed 1 December 2009.
  • 48
    IAPO. What is Patient-Centred Healthcare, A Review of Definitions and Principles, 2nd edn. London, UK: International Alliance of Patient Organizations, 2007.
  • 49
    EPF-b. Policy Recommendations, Patient Involvement in Health Programmes and Policy. Brussels: European Patients’ Forum, 2009.
  • 50
    EPF-c. Handbook for Project Coordinators, Leaders and Promoters on Meaningful Patient Involvement. Brussels: European Patients’ Forum, 2009.
  • 51
    EPECS. European Patients Empowerment for Customised Solutions – Declaration of Intent. Maastricht, the Netherlands: EPECS, http://www.epecs.eu , 2007, accessed 1 December 2009.
  • 52
    EIWH. European Institute of Women’s Health – Brochure. Dublin, Ireland: EIWH, http://www.eurohealth.ie , 2006, accessed 1 December 2009.
  • 53
    Picker Institute. Principles, http://www.pickerinstitute.org , 2009, accessed 1 December 2009.
  • 54
    Planetree Inc. Principles, http://www.planetree.com , 2009, accessed 1 December 2009.
  • 55
    Shaller D. Patient-Centered Care: What Does It Take? Oct 24, 2007, The Commonwealth Fund, Vol. 74: Picker Institute, 2007.
  • 56
    Cochrane Collaboration. Stages of Consumer Input – Protocol and Review Stages. USA, http://www.cochrane.org , 2009, accessed 1 December 2009.
  • 57
    WHO-d. The WHO’s role and responsibilities in health research. Draft strategy on the research for health. 18 December 2008, The Executive board, 124th session, 2008b. 19, Article 56.
  • 58
    Kelson M. Patient and Public Involvement Programme (PPIP) Annual Report. UK: National Institute for Health and Clinical Excellence (NICE), 2009 Item 4.
  • 59
    IAPO. Adressing global patient safety issues, an advocacy toolkit for patients’ organizations, IAPO, International alliance of patient organisations. Educational grant by F. Hoffmann-La Roche, 2008.
  • 60
    Involve. P1: Getting involved in research grant applications, Guidelines for members of the public, NHS – National Institute for Health Research, and P2: peer reviewing research proposals, Guidelines for members of the public. DH Department of Health, http://www.invo.org.uk , 2009, accessed 1 December 2009.
  • 61
    JLA. How the James Lind Alliance Works. UK: JLA, http://www.lindalliance.org , 2009, accessed 1 December 2009.
  • 62
    Vilans. Kwaliteit van leven. Available at: http://www.Vilans.nl (internet 1 July 2009), 2009.
  • 63
    London Health Sciences Centre. Canadian Directory of Genetic Support Groups, Introduction to the Directory. London, ON: London Health Sciences Centre, http://www.LHSC.on.ca , 2009, accessed 1 December 2009.
  • 64
    PatientView. European Patient Group Directory 2008. Brussels: Burson-Marsteller, 2008.
  • 65
    Hjertqvist J. The Empowerment of the European Patient, Health Consumer Power House AB. Brussels, 2009: 19, 20, 28, 31, 36, 43.
  • 66
    Voice4Patients, http://www.Voice4Patients.com, 2010, accessed 1 December 2009.
  • 67
    Nierse C, Abma TA, Horemans A, van Engelen B. Kwaliteit en gezondheid. Integrale agenda voor neuromusculair onderzoek, Eindrapportage, ZonMw/UM/VSN/ISNO, 2007.
  • 68
    Dahlberg K, Todres L, Galvin K. Lifeworld-led care is more than patient-led care: an existential view of well-being. Medicine, Health Care and Philosophy, 2009; 12: 265271. DOI: 10.1007/s11019-008-9174-7.
  • 69
    Visse MA, Teunissen T, Peters A, Widdershoven G, Abma TA. Dialogue for air, air for dialogue. Toward shared responsibilities in COPD practice. Health Care Analysis, 2010; 18: 358373.
  • 70
    Williamson C. Towards the Emancipation of Patients, Patients’ Experiences and the Patient Movement. Bristol: Policy Press, University of Bristol, 2010.
  • 71
    Baur VE, Elteren AHG, van Nierse CJ, Abma TA. Dealing with distrust and power dynamics. Assymetric relations among stakeholders in responsive evaluation. Evaluation, 2010; 3: 233248.
  • 72
    Elberse JE, Caron-Flinterman JF, Broerse EW. Patient-expert partnerships in research: how to stimulate inclusion of patient perspectives. Health Expectations, 2010; 14: DOI: 10.1111/j.1369-7625.2010.00647.x.