Skip to main content
SpringerLink
Log in

Developing Guidance on Ethics for Patient Groups Collecting and Reporting Patient Information for Health Technology Assessments

  • Commentary
  • Published:
The Patient - Patient-Centered Outcomes Research Aims and scope Submit manuscript

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

References

  1. Hailey DW. Involvement of consumers in health technology assessments by INAHTA agencies. Int J Technol Assess Health Care. 2013;29(1):79–83.

    Article  PubMed  Google Scholar 

  2. Gagnon MP, Desmartis M, Lepage-Savary D, Gagnon J, St-Pierre M, Rhainds M, Lemieux R, Gauvin FP, Pollender H, Légaré F. Introducing patients’ and the public’s perspectives to health technology assessment: a systematic review of international experiences. Int J Technol Assess Health Care. 2011;27(1):31–42.

    Article  PubMed  Google Scholar 

  3. Gauvin FP, Abelson J, Giacomini M, Eyles J, Lavis JN. Moving cautiously: public involvement and the Health Technology Assessment Community. Int J Technol Assess Health Care. 2011;27(1):43–9.

    Article  PubMed  Google Scholar 

  4. Smit C. Personal reflections of a patient representative in an appraisal committee. Patient. 2015;8:5–10.

    Article  PubMed  Google Scholar 

  5. Patients and Citizen Involvement Interest Sub-Group. Good practice examples of patient and public involvement in health technology assessment. Feb 2015. http://www.htai.org/fileadmin/HTAi_Files/ISG/PatientInvolvement/EffectiveInvolvement/Good_Practice_Examples_Feb_2015.pdf. Accessed 17 Jul 2015.

  6. Facey K, Boivin A, Gracia J, Hansen HP, Lo Scalzo A, Mossman J, Single A. Patients’ perspectives in health technology assessment: a route to robust evidence and fair deliberation. Int J Technol Assess Health Care. 2010;26(3):334–40.

    Article  PubMed  Google Scholar 

  7. Patients and Citizen Involvement Interest Sub-Group. Patient group submission template—medicines HTA. 2014. http://www.htai.org/interest-groups/patient-and-citizen-involvement/resources/for-hta-agencies-and-policy-makers.html. Accessed 17 Jul 2015.

  8. Patients and Citizen Involvement Interest Sub-Group. Patient group submission template—non-medicines HTA. 2014. http://www.htai.org/interest-groups/patient-and-citizen-involvement/resources/for-hta-agencies-and-policy-makers.html. Accessed 17 Jul 2015.

  9. Scottish Medicines Consortium. Patient group submission form. http://www.scottishmedicines.org.uk/Public_Involvement/Patient_Group_Submission_Form.pdf. Accessed 11 Sep 2015.

  10. National Institute for Health and Care Excellence. Patient/Carer Organisation Statement. http://www.nice.org.uk/Media/Default/About/NICE-Communities/Public-involvement/Developing-NICE-guidance/Patient-Organisation-STA-Template.docm. Accessed 11 Sep 2015.

  11. Canadian Agency for Drugs and Technologies in Health. Patient input templates. https://www.cadth.ca/about-cadth/what-we-do/products-services/cdr/patient-input/patient-input-templates. Accessed 11 Sep 2015.

  12. Patients and Citizen Involvement Interest Sub-Group, Patients and Citizen Involvement Interest Sub-Group. 2013. http://www.htai.org/fileadmin/HTAi_Files/ISG/PatientInvolvement/v2_files/Info/PCISG-Info-PCISGBrochure-11-Nov14.pdf. Accessed 17 Jul 2015.

  13. Patients and Citizen Involvement Interest Sub-Group. Completing a patient group template: guidance for patient organisations for health technology assessments and appraisal of medicines. 2015. http://www.htai.org/fileadmin/HTAi_Files/ISG/PatientInvolvement/v2_files/Resource/PCISG-Resource-GuidanceandChecklist-Dec14.pdf. Accessed 17 Jul 2015.

  14. pan-Canadian Oncology Drug Review. Guide for Patient Advocacy Groups: How to provide patient and caregiver input for a pCODR drug review. 2013. http://www.pcodr.ca/idc/groups/pcodr/documents/pcodrdocument/pcodr-patient-guide.pdf. Accessed 11 Sep 2015.

  15. National Health and Medical Research Council, the Australian Research Council and Universities Australia. The Australian code for responsible conduct of research. 2009. https://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/r39.pdf. Accessed 16 Jul 2015.

  16. INVOLVE. Jargon buster: ethics. http://www.invo.org.uk/resource-centre/useful-information/jargon-buster/?letter=E. Accessed 16 Jul 2015.

  17. Patients and Citizen Involvement Interest Sub-Group. Values and quality standards for patient involvement in HTA. 2014. http://www.htai.org/fileadmin/HTAi_Files/ISG/PatientInvolvement/v2_files/Info/PCISG-Info-ValuesandStandards-30-Jun14.pdf. Accessed 17 Jul 2015.

Download references

Acknowledgments

The authors would like to acknowledge the work of Neil Bertelson, Bayer Healthcare, who made a substantial contribution to the development of the documents on ethical guidance.

Author information

Authors and Affiliations

  1. HTAi Patient and Citizen Involvement in HTA Interest Group Member, Ashgrove, QLD, Australia

    Ann N. V. Single

  2. HTAi Ethics Interest Group and NHMRC Clinical Trials Centre, University of Sydney, Camperdown, NSW, Australia

    Anna M. Scott

  3. HTAi Patient and Citizen Involvement in HTA Interest Group Chair, Brunswick, VIC, Australia

    Janet Wale

Authors
  1. Ann N. V. Single
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Anna M. Scott
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Janet Wale
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Ann N. V. Single.

Ethics declarations

Conflict of interest

Single A. N. V. and Wale J. declare that they have no conflict of interest. During the preparation of this paper, Scott A. M. was employed by the NHMRC Clinical Trials Centre, which is contracted by Medical Services Advisory Committee (MSAC) to perform systematic reviews as part of its HTA process.

Funding statement

Work undertaken to provide ethical guidance to patient groups on collecting and reporting information for patient submissions was unfunded. It was undertaken on a voluntary basis by members of the HTAi Patient and Citizen Involvement Interest Group and the HTAi Ethics Interest Group. The authors also contributed their time to this paper without funding.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Single, A.N.V., Scott, A.M. & Wale, J. Developing Guidance on Ethics for Patient Groups Collecting and Reporting Patient Information for Health Technology Assessments. Patient 9, 1–4 (2016). https://doi.org/10.1007/s40271-015-0143-y

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s40271-015-0143-y

Keywords

Search

Navigation