IDEAS home Printed from https://ideas.repec.org/a/plo/pone00/0113274.html
   My bibliography  Save this article

Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review

Author

Listed:
  • Jonas Lander
  • Tobias Hainz
  • Irene Hirschberg
  • Daniel Strech

Abstract

Background: A recent report from the British Nuffield Council on Bioethics associated ‘emerging biotechnologies’ with a threefold challenge: 1) uncertainty about outcomes, 2) diverse public views on the values and implications attached to biotechnologies and 3) the possibility of creating radical changes regarding societal relations and practices. To address these challenges, leading international institutions stress the need for public involvement activities (PIAs). The objective of this study was to assess the state of PIA reports in the field of biomedical research. Methods: PIA reports were identified via a systematic literature search. Thematic text analysis was employed for data extraction. Results: After filtering, 35 public consultation and 11 public participation studies were included in this review. Analysis and synthesis of all 46 PIA studies resulted in 6 distinguishable PIA objectives and 37 corresponding PIA methods. Reports of outcome translation and PIA evaluation were found in 9 and 10 studies respectively (20% and 22%). The paper presents qualitative details. Discussion: The state of PIAs on biomedical research and innovation is characterized by a broad range of methods and awkward variation in the wording of objectives. Better comparability of PIAs might improve the translation of PIA findings into further policy development. PIA-specific reporting guidelines would help in this regard. The modest level of translation efforts is another pointer to the “deliberation to policy gap”. The results of this review could inform the design of new PIAs and future efforts to improve PIA comparability and outcome translation.

Suggested Citation

  • Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.
    • Handle: RePEc:plo:pone00:0113274
    DOI: 10.1371/journal.pone.0113274
    as

    Download full text from publisher

    File URL: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0113274
    Download Restriction: no
    File URL: https://journals.plos.org/plosone/article/file?id=10.1371/journal.pone.0113274&type=printable
    Download Restriction: no
    File URL: https://libkey.io/10.1371/journal.pone.0113274?utm_source=ideas
    LibKey link: if access is restricted and if your library uses this service, LibKey will redirect you to where you can use your library subscription to access this item
    ---><---

    References listed on IDEAS

    as
    1. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Smith, Patricia & Martin, Elisabeth & Gauvin, Francois-Pierre, 2003. "Deliberations about deliberative methods: issues in the design and evaluation of public participation processes," Social Science & Medicine, Elsevier, vol. 57(2), pages 239-251, July.
    2. O'Doherty, Kieran C. & Hawkins, Alice K. & Burgess, Michael M., 2012. "Involving citizens in the ethics of biobank research: Informing institutional policy through structured public deliberation," Social Science & Medicine, Elsevier, vol. 75(9), pages 1604-1611.
    3. Molyneux, C.S. & Wassenaar, D.R. & Peshu, N. & Marsh, K., 2005. "'Even if they ask you to stand by a tree all day, you will have to do it (laughter)...!': Community voices on the notion and practice of informed consent for biomedical research in developing countrie," Social Science & Medicine, Elsevier, vol. 61(2), pages 443-454, July.
    4. Shepherd, Richard & Barnett, Julie & Cooper, Helen & Coyle, Adrian & Moran-Ellis, Jo & Senior, Victoria & Walton, Chris, 2007. "Towards an understanding of British public attitudes concerning human cloning," Social Science & Medicine, Elsevier, vol. 65(2), pages 377-392, July.
    5. Boote, Jonathan & Baird, Wendy & Beecroft, Claire, 2010. "Public involvement at the design stage of primary health research: A narrative review of case examples," Health Policy, Elsevier, vol. 95(1), pages 10-23, April.
    6. Rothwell, Erin & Anderson, Rebecca & Goldenberg, Aaron & Lewis, Michelle H. & Stark, Louisa & Burbank, Matthew & Wong, Bob & Botkin, Jeffrey R., 2012. "Assessing public attitudes on the retention and use of residual newborn screening blood samples: A focus group study," Social Science & Medicine, Elsevier, vol. 74(8), pages 1305-1309.
    7. Secko, David M. & Preto, Nina & Niemeyer, Simon & Burgess, Michael M., 2009. "Informed consent in biobank research: A deliberative approach to the debate," Social Science & Medicine, Elsevier, vol. 68(4), pages 781-789, February.
    8. Murphy, J. & Scott, J. & Kaufman, D. & Geller, G. & LeRoy, L. & Hudson, K., 2009. "Public perspectives on informed consent for biobanking," American Journal of Public Health, American Public Health Association, vol. 99(12), pages 2128-2134.
    9. Marsh, Vicki & Kombe, Francis & Fitzpatrick, Ray & Molyneux, Sassy & Parker, Michael, 2013. "Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: ‘Consulting communities’ to inform policy," Social Science & Medicine, Elsevier, vol. 96(C), pages 192-199.
    10. Abelson, Julia & Forest, Pierre-Gerlier & Eyles, John & Casebeer, Ann & Martin, Elisabeth & Mackean, Gail, 2007. "Examining the role of context in the implementation of a deliberative public participation experiment: Results from a Canadian comparative study," Social Science & Medicine, Elsevier, vol. 64(10), pages 2115-2128, May.
    11. Bates, Benjamin R. & Lynch, John A. & Bevan, Jennifer L. & Condit, Celeste M., 2005. "Warranted concerns, warranted outlooks: a focus group study of public understandings of genetic research," Social Science & Medicine, Elsevier, vol. 60(2), pages 331-344, January.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Street, Jackie & Duszynski, Katherine & Krawczyk, Stephanie & Braunack-Mayer, Annette, 2014. "The use of citizens' juries in health policy decision-making: A systematic review," Social Science & Medicine, Elsevier, vol. 109(C), pages 1-9.
    2. Deng, Chung-Yeh & Wu, Chia-Ling, 2010. "An innovative participatory method for newly democratic societies: The "civic groups forum" on national health insurance reform in Taiwan," Social Science & Medicine, Elsevier, vol. 70(6), pages 896-903, March.
    3. Anita Gębska-Kuczerowska & Sudakshina Lahiri & Robert Gajda, 2020. "Bridging the Gap between Theory, Practice, and Policy: A Decision-Making Process Based on Public Health Evidence Feasible in Multi-Stage Research on Biological Risk Factors in Poland," IJERPH, MDPI, vol. 17(20), pages 1-11, October.
    4. Carman, Kristin L. & Mallery, Coretta & Maurer, Maureen & Wang, Grace & Garfinkel, Steve & Yang, Manshu & Gilmore, Dierdre & Windham, Amy & Ginsburg, Marjorie & Sofaer, Shoshanna & Gold, Marthe & Path, 2015. "Effectiveness of public deliberation methods for gathering input on issues in healthcare: Results from a randomized trial," Social Science & Medicine, Elsevier, vol. 133(C), pages 11-20.
    5. repec:cep:sticas:/159 is not listed on IDEAS
    6. Baumann, Lisa Ann & Reinhold, Anna Katharina & Brütt, Anna Levke, 2022. "Public and patient involvement in health policy decision-making on the health system level – A scoping review," Health Policy, Elsevier, vol. 126(10), pages 1023-1038.
    7. Julia Keenan & Fiona Poland & Jonathan Boote & Amanda Howe & Helena Wythe & Anna Varley & Penny Vicary & Lisa Irvine & Amander Wellings, 2019. "‘We’re passengers sailing in the same ship, but we have our own berths to sleep in’: Evaluating patient and public involvement within a regional research programme: An action research project informed," PLOS ONE, Public Library of Science, vol. 14(5), pages 1-28, May.
    8. Regier, Dean A. & Bentley, Colene & Mitton, Craig & Bryan, Stirling & Burgess, Michael M. & Chesney, Ellen & Coldman, Andy & Gibson, Jennifer & Hoch, Jeffrey & Rahman, Syed & Sabharwal, Mona & Sawka, , 2014. "Public engagement in priority-setting: Results from a pan-Canadian survey of decision-makers in cancer control," Social Science & Medicine, Elsevier, vol. 122(C), pages 130-139.
    9. Burchardt, Tania, 2012. "Deliberative research as a tool to make value judgements," LSE Research Online Documents on Economics 43904, London School of Economics and Political Science, LSE Library.
    10. Elberse, Janneke Elisabeth & Pittens, Carina Anna Cornelia Maria & de Cock Buning, Tjard & Broerse, Jacqueline Elisabeth Willy, 2012. "Patient involvement in a scientific advisory process: Setting the research agenda for medical products," Health Policy, Elsevier, vol. 107(2), pages 231-242.
    11. Melanie Goisauf & Gillian Martin & Heidi Beate Bentzen & Isabelle Budin-Ljøsne & Lars Ursin & Anna Durnová & Liis Leitsalu & Katharine Smith & Sara Casati & Marialuisa Lavitrano & Deborah Mascalzoni &, 2019. "Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research," PLOS ONE, Public Library of Science, vol. 14(9), pages 1-22, September.
    12. Kieran C. O’Doherty & Michael K. MacKenzie & Dan Badulescu & Michael M. Burgess, 2013. "Explosives, Genomics, and the Environment," SAGE Open, , vol. 3(1), pages 21582440134, March.
    13. Tania Burchardt, 2012. "Deliberative research as a tool to make value judgements," CASE Papers case159, Centre for Analysis of Social Exclusion, LSE.
    14. Blackstock, K.L. & Kelly, G.J. & Horsey, B.L., 2007. "Developing and applying a framework to evaluate participatory research for sustainability," Ecological Economics, Elsevier, vol. 60(4), pages 726-742, February.
    15. Walmsley, Heather L., 2011. "Stock options, tax credits or employment contracts please! The value of deliberative public disagreement about human tissue donation," Social Science & Medicine, Elsevier, vol. 73(2), pages 209-216, July.
    16. Clare Bayley & Simon French, 2008. "Designing a Participatory Process for Stakeholder Involvement in a Societal Decision," Group Decision and Negotiation, Springer, vol. 17(3), pages 195-210, May.
    17. Swaans, Kees & Broerse, Jacqueline & Meincke, Maylin & Mudhara, Maxwell & Bunders, Joske, 2009. "Promoting food security and well-being among poor and HIV/AIDS affected households: Lessons from an interactive and integrated approach," Evaluation and Program Planning, Elsevier, vol. 32(1), pages 31-42, February.
    18. Ailian Zhang & Mengmeng Pan, 2020. "“Smart Process” of Medical Innovation: The Synergism Based on Network and Physical Space," IJERPH, MDPI, vol. 17(11), pages 1-17, May.
    19. Mauro Serapioni & Pedro Lopes Ferreira & Patrícia Antunes, 2014. "Participação em Saúde: Conceitos e Conteúdos," Notas Económicas, Faculty of Economics, University of Coimbra, issue 40, pages 26-42, December.
    20. Degeling, Chris & Rychetnik, Lucie & Street, Jackie & Thomas, Rae & Carter, Stacy M., 2017. "Influencing health policy through public deliberation: Lessons learned from two decades of Citizens'/community juries," Social Science & Medicine, Elsevier, vol. 179(C), pages 166-171.
    21. Anand Chand & Suwastika Naidu, 2017. "Health Care Service Quality and Availability of Skilled Health Workforce: A Panel Data Modelling of the UK, USA and Israel," Modern Applied Science, Canadian Center of Science and Education, vol. 11(10), pages 152-152, October.

    More about this item

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:plo:pone00:0113274. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: plosone (email available below). General contact details of provider: https://journals.plos.org/plosone/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.