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Communication
Research
Research priorities in health communication and participation: international survey of consumers and other stakeholders
  1. Anneliese Synnot1,2,
  2. Peter Bragge3,
  3. Dianne Lowe1,
  4. Jack S Nunn1,
  5. Molly O’Sullivan4,
  6. Lidia Horvat5,
  7. Allison Tong6,7,
  8. Debra Kay8,
  9. Davina Ghersi9,10,
  10. Steve McDonald2,
  11. Naomi Poole11,
  12. Noni Bourke12,
  13. Natasha Lannin13,14,
  14. Danny Vadasz15,
  15. Sandy Oliver16,17,
  16. Karen Carey18,
  17. Sophie J Hill1
  1. 1 Centre for Health Communication and Participation, School of Psychology and Public Health, La Trobe University, Melbourne, Victoria, Australia
  2. 2 Cochrane Australia, School of Public Health and Preventive Medicine, Monash University, Melbourne, Victoria, Australia
  3. 3 BehaviourWorks Australia, Monash Sustainable Development Institute, Monash University, Melbourne, Victoria, Australia
  4. 4 Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
  5. 5 Safer Care Victoria, Melbourne, Victoria, Australia
  6. 6 Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia
  7. 7 Centre for Kidney Research, The Children’s Hospital at Westmead, Sydney, New South Wales, Australia
  8. 8 South Australian Health and Medical Research Institute, Adelaide, South Australia, Australia
  9. 9 NHMRC Clinical Trials Centre, Sydney Medical School, The University of Sydney, Sydney, New South Wales, Australia
  10. 10 National Health and Medical Research Council, Canberra, New South Wales, Australia
  11. 11 Australian Commission on Safety and Quality in Healthcare, Sydney, New South Wales, Australia
  12. 12 Bass Coast Health, Wonthaggi, Victoria, Australia
  13. 13 Alfred Health, Melbourne, Victoria, Australia
  14. 14 School of Allied Health (Occupational Therapy), La Trobe University, Melbourne, Victoria, Australia
  15. 15 Health Issues Centre, Melbourne, Victoria, Australia
  16. 16 University College London, London, UK
  17. 17 Universityof Johannesburg, Johannesburg, South Africa
  18. 18 Formerly of Consumers Health Forum, Canberra, Australia
  1. Correspondence to Anneliese Synnot; a.synnot{at}latrobe.edu.au

Abstract

Objective To identify research priorities of consumers and other stakeholders to inform Cochrane Reviews in ‘health communication and participation’ (including such concepts as patient experience, shared decision-making and health literacy).

Setting International.

Participants We included anyone with an interest in health communication and participation. Up to 151 participants (18–80 years; 117 female) across 12 countries took part, including 48 consumers (patients, carers, consumer representatives) and 75 professionals (health professionals, policymakers, researchers) (plus 25 people who identified as both).

Design Survey.

Methods We invited people to submit their research ideas via an online survey open for 4 weeks. Using inductive thematic analysis, we generated priority research topics, then classified these into broader themes.

Results Participants submitted 200 research ideas, which we grouped into 21 priority topics. Key research priorities included: insufficient consumer involvement in research (19 responses), ‘official’ health information is contradictory and hard to understand (18 responses), communication/coordination breakdowns in health services (15 responses), health information provision a low priority for health professionals (15 responses), insufficient eliciting of patient preferences (14 responses), health services poorly understand/implement patient-centred care (14 responses), lack of holistic care impacting healthcare quality and safety (13 responses) and inadequate consumer involvement in service design (11 responses). These priorities encompassed acute and community health settings, with implications for policy and research. Priority populations of interest included people from diverse cultural and linguistic backgrounds, carers, and people with low educational attainment, or mental illness. Most frequently suggested interventions focused on training and cultural change activities for health services and health professionals.

Conclusions Consumers and other stakeholders want research addressing structural and cultural challenges in health services (eg, lack of holistic, patient-centred, culturally safe care) and building health professionals’ communication skills. Solutions should be devised in partnership with consumers, and focus on the needs of vulnerable groups.

  • Cochrane
  • research priorities
  • consumers
  • stakeholders
  • patient preference
  • communication

This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

https://doi.org/10.1136/bmjopen-2017-019481

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    Footnotes

    • Contributors AJS led the study design, data collection, analysis and interpretation, and manuscript preparation. As steering group members, PB, LH, DK, DG, SM, NP, NB, NL, DV, SO and KC contributed to study design and interpretation, and commented on manuscript drafts. DL contributed to data analysis and interpretation, and commented on manuscript drafts. JSN contributed to study design, data analysis and interpretation, and commented on manuscript drafts. MOS contributed to study design and data collection and commented on manuscript drafts. AT contributed to data interpretation and critically revised the manuscript for important content. SJH contributed to study design, analysis and interpretation, and critically revised the manuscript for important content. All authors approved the final version of the manuscript.

    • Funding This work was partially funded by the La Trobe University Building Healthy Communities Research Focus Area (2015 Grant Scheme and 2016 Research-Enabling Scheme) and Cochrane Australia. AJS is supported by a National Health and Medical Research Council (NHMRC) Public Health and Health Services Postgraduate Research Scholarship (grant number 1132803, 2017–2019). AT is supported by an NHMRC Career Development Fellowship (1106716). SJH is supported by a Funding and Service Agreement, Department of Health and Human Services Victoria.

    • Competing interests None declared.

    • Patient consent Obtained.

    • Ethics approval La Trobe Univeristy College of Science Health and Engineering Human Ethics Sub-Committee.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Data sharing statement No additional unpublished data are available.