Objective

To evaluate the frequency of patient perspective publications that document patient involvement, individually or collectively, through authorship or acknowledgments.

Introduction

• Patient involvement in research and publications provides unique perspective in the relevance of the study, yet patients remain underrecognized as authors ^1,2
• A patient author may be a patient, family member, caregiver, or advocate who contributes the perspective of the lived experience of a disease or condition to scientific publications ²
• Recognition of the need to involve patients in research and publications continues to grow, as journals and congresses encourage researchers to include patients as authors, contributors, and peer reviewers ²
• GPP 2022 recognizes patients and advocates as experts: if authorship criteria are met, they may be authors, and reasonable compensation for their contributions is ethically permissible ³
• The BMJ now compensates patients and public reviewers as part of its commitment to co-producing patient-centered content ⁴
• ISMPP encourages medical communication professionals to support the evolving role of patient authorship and outlines strategies for effective inclusion of patient authors ⁵
• Identifying patient-authored publications is challenging because, across publications, there is no clear method for tracking or identifying patient authors ²
  
  

Methods

• A PubMed literature search identified publications from 2023 to 2024 that included “patient” and “perspectives” in the title.
• Of the publications identified from the search, articles that were not freely available were excluded.
• Two reviewers screened the remaining publications to identify patients as authors:
  
  
  • “Patient author” or “Patient partner” in the author bylines
  • Patient organizations in the affiliations or acknowledgments sections
  • General patient acknowledgments 

• Publications were assessed for industry funding, then further stratified by therapeutic area and study methodology.
  
  

Results

• Of the 170 publications identified, 41% recognized patients as authors (Figure 1)
• 5% (n=8) of publications included patient author or patient advocate groups in the author byline (Figures 2 and 3)

Figure 1. Flowchart of Search Outcomes

Figure 2. Patient Author Listed in the Author Byline ⁶

Figure 3. Patient Advocate Listed as a Patient Author ⁷

In total, 2% (4/170) of publications recognized patients or patient advocates in the acknowledgment section, for example (bolding added):

"We would like to thank the members of Hope for HS, HS Connect, and HS Warriors for participating in our survey. Special thank you to the following patient advocates who provided feedback about the survey: Athena Mammis‐Gierbolini, Brindley Brooks, and Denise Panter‐Fixsen."
- Arroyave Caicedo et al. ⁸

"We gratefully acknowledge the participants for sharing their stories, sometimes at great cost to their daily functioning. We thank K. Hartley and P. Garner for providing feedback on the study design, interview guide, and results based on their lived experience with ME/CFS. We also thank Recovery Norway for their recruitment assistance."
- Hasan et al.⁹

Of the 16 industry-funded publications, 13% (n=2) of publications acknowledged patient authors in the author’s list, and 44% (n=7) of publications had general acknowledgment statements that included patient authors.

• 80% (136/170) of publications addressed a wide variety of therapeutic areas vs nontherapeutic areas.
• Recognition of patients as authors or patient advocates by study methodology are
  described in Figure 4.

Figure 4. Recognition Categories by Methodology in Analyzed Publications

Conclusions

• Despite patient experience being central to many patient perspective studies, patients are rarely invited as authors, highlighting gaps in author representation and inclusion.
• When patient authors were listed in the acknowledgments section, their contributions to the publication were often unclear.
• The increase in the inclusion of patients as authors in publications highlights the need for clear and consistent practices for patient author recognition.
• We recommend the following approaches to ensure that patient authors receive meaningful acknowledgment when they meet ICMJE authorship criteria:
  
  
  1. List “Patient Author” in the affiliation, along with their associated organization.
  2. Acknowledge the affiliated patient organization in the acknowledgments section.
  3. Clearly define each author’s role and contribution in the author contributions section.
  4. Consider reimbursement for patients’ time and unique perspectives of the disease state.
  5. Demonstrate industry-wide leadership by expanding GPP and ICMJE guidelines to include clear, practical standards for recognizing and implementing patient authorship.
• This study underscores the need to systematically acknowledge patients’ contributions to enhance the transparency, relevance, and impact of research

References

1. Cobey KD, et al. Res Involv Engagem. 2021;7(1):39.
2. Oliver J, et al. Res Involv Engagem. 2022;8(1):12.
3. DeTora LM, et al. Ann Intern Med. 2022;175(9):1298-304.
4. Doble E, et al. BMJ. 2024;387:q2581.
5. Woolley KL, et al. 2020. https://www.ismpp-newsletter.com/2020/05/26/patient-authorshipthree-key-questions-answers-for-medical-communication-professionals-part-b/.
6. Shlobin OA, et al. Pulm Circ. 2024;14(4):e12441.
7. Maheswaranathan M, et al. Clin Rheumatol. 2024;43(1):543-52.
8. Arroyave Caicedo NM, et al. BJGP Open. 2024;8(1).
9. Hasan Z, et al. J Eval Clin Pract. 2024;30(2):234-42.

Acknowledgment: Stephen Bublitz, ELS (Woven Health Collective, New York, NY) provided editorial assistance.

Disclosures: All authors are employees of Woven Health Collective.

Supported by: Woven Health Collective, New York, NY.