Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Comment
  • Published:

The power of public and patient involvement in healthcare innovation

Healthcare innovation greatly benefits from the proactive inclusion of patients. Here we outline the importance of patients as co-creators of healthcare technology, providing insight into patient community engagement and resources for inclusion of the public and patients.

This is a preview of subscription content, access via your institution

Access options

Buy this article

Prices may be subject to local taxes which are calculated during checkout

References

  1. Chalmers, I. & Glasziou, P. Avoidable waste in the production and reporting of research evidence. Lancet 374, 86–89 (2009).

    Article  Google Scholar 

  2. Levitan, B. et al. Assessing the financial value of patient engagement: a quantitative approach from CTTI’s Patient Groups And Clinical Trials Project. Ther. Innov. Regul. Sci. 52, 220–229 (2018).

    Article  Google Scholar 

  3. Foláyan, M. O. & Haire, B. What’s trust got to do with research: why not accountability? Front. Res. Metr. Anal. 8, 1237742 (2023).

    Article  Google Scholar 

  4. Geissler, J., Ryll, B., di Priolo, S. L. & Uhlenhopp, M. Improving patient involvement in medicines research and development: a practical roadmap. Ther. Innov. Regul. Sci. 51, 612–619 (2017).

    Article  Google Scholar 

  5. Warner, K. et al. EUPATI guidance for patient involvement in medicines research and development (R&D); guidance for pharmaceutical industry-led medicines R&D. Front. Med. 5, 270 (2018).

    Article  Google Scholar 

  6. Clay, I. et al. Reverse engineering of digital measures: inviting patients to the conversation. Digit. Biomark. 7, 28–44 (2023).

    Article  Google Scholar 

  7. Jacob, C., Bourke, S. & Heuss, S. From testers to cocreators-the value of and approaches to successful patient engagement in the development of eHealth solutions: qualitative expert interview study. JMIR Hum. Factors 9, e41481 (2022).

    Article  Google Scholar 

  8. Patient involvement in the development, regulation and safe use of medicines. CIOMS Working Group report. https://doi.org/10.56759/iiew8982 (Council for International Organizations of Medical Sciences, 2022).

  9. Klein, B. et al. Measuring and demonstrating the value of patient engagement across the medicines lifecycle: a patient engagement impact measurement framework. Patient 18, 3–18 (2025).

    Article  Google Scholar 

  10. Jobson, E. et al. Embedding patient engagement in the R&D process of a life sciences company through co-creation with a patient expert R&D board: a case study. Res. Involv. Engagem. 10, 116 (2024).

    Article  Google Scholar 

  11. Farr, C. Michael Seres, an influential patient who hacked together a ‘smart’ ostomy bag, dies at 51. CNBC https://go.nature.com/42GOoY9 (2 June 2020).

  12. Heltzel,P. The diabetes patients who hacked a pancreas. experience https://go.nature.com/3S2qIbE (13 November 2019).

  13. Lowe, D. Exubera, safety, and no guarantees. Science Blogs https://go.nature.com/44IsIxc (10 April 2008).

Download references

Author information

Authors and Affiliations

Authors

Contributions

S.B. wrote the manuscript, and the other authors contributed to discussion of the content and to preparing the final version.

Corresponding author

Correspondence to Steven Bourke.

Ethics declarations

Competing interests

S.B. is the CEO founder of PersonalPulse. J.G. is the founder and CEO of Patvocates. M.M. is an employee and shareholder of F. Hoffmann-La Roche.

Additional information

Related links

11 Health Technology: https://www.11health.com/

Academic and industry training resources: https://eupati.eu/eupati-learning-lab/

Diabetes technology and monitoring: https://expmag.com/2019/11/the-diabetes-patients-who-hacked-a-pancreas/

European Medicines Agency (EMA): https://www.ema.europa.eu/en/partners-networks/patients-consumers#related-documents-18041

European Patients’ Academy on Therapeutic Innovation (EUPATI): https://eupati.eu/

Exubera: https://www.science.org/content/blog-post/exubera-safety-and-no-guarantees

Good Lay Summary Practice (GLSP): https://glsp.network/

IMI Prefer Project: https://www.imi-prefer.eu/w/ip/publications/deliverables

Innovative Health Initiative (IHI): https://www.ihi.europa.eu/

James Lind Alliance: https://www.jla.nihr.ac.uk/

Journal of Patient Experience: https://journalpatientexperience.org/

Medical devices: https://toolbox.eupati.eu/resources/patient-toolbox/introduction-to-patient-involvement-in-medical-devices/#:~:text=Medical%20Device%20R%26D-,Patient%20Involvement%20Perspectives,improving%20their%20quality%20of%20life

Medicines R&D: https://pmc.ncbi.nlm.nih.gov/articles/PMC6190844/figure/F1/

Michael J. Fox Foundation: https://www.michaeljfox.org/

Michael Seres: https://www.cnbc.com/2020/06/02/michael-seres-patient-who-invented-smart-ostomy-bag-dies-at-51.html

Network of Cancer Patient Organisations in Europe (WECAN) academy: https://wecanadvocate.eu/academy/

PALADIN consortium resource repository: https://sites.tufts.edu/paladinconsortium/getting-started-copy/

Patient Engagement Open Forum (PEOF): https://patientengagement.synapseconnect.org/initiatives/patient-engagement-open-forum-peof

Patient expert training: https://learning.eupati.eu/

Patient-Centered Outcomes Research Institute (PCORI): https://www.pcori.org/engagement-research/engagement-resources

Patient-Focused Medicine (PFMD): https://patientfocusedmedicine.org/

Patvocates: https://www.patvocates.net/

PersonalPulse: https://www.personalpulse.com/

PPI Ignite: https://ppinetwork.ie/resource/

Training in PPI: https://www.learningforinvolvement.org.uk/

US Food and Drug Administration (FDA): https://www.fda.gov/drugs/development-approval-process-drugs/cder-patient-focused-drug-development

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Gomes, V.P., May, M., Geissler, J. et al. The power of public and patient involvement in healthcare innovation. Nat Rev Bioeng (2025). https://doi.org/10.1038/s44222-025-00315-4

Download citation

  • Published:

  • DOI: https://doi.org/10.1038/s44222-025-00315-4

Search

Quick links

Nature Briefing

Sign up for the Nature Briefing newsletter — what matters in science, free to your inbox daily.

Get the most important science stories of the day, free in your inbox. Sign up for Nature Briefing