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We have read with interest the article by Dean et al(1). We completely agree with the premise that the ‘patient voice’ is not being fully utilised in all facets of ophthalmic care, ranging from research to clinical practice. Evidence suggests that rather than being a tokenistic addition, listening to the ‘patient voice’ can provide tangible improvements in cost efficiency and healthcare outcomes(2).
A successful project spearheaded by the European Respiratory Society (ERS) called EMBARC(3) (European Multicentre Bronchiectasis Audit and Research Collaboration) sought to be a patient focused project, despite scarce existing infrastructure for patient involvement(3). In the research sphere of the project, patients were involved in clinical trials and studies. They played key roles in study design, wrote letters to secure financial backing for bronchiectasis-related projects, and were active members of advisory boards and ethical committees. Patients were a valuable asset on guideline panels, providing an alternative insight on the merits and negatives of various interventions, as well as their general acceptability. This initiative is a model example of how patients can influence the path research takes, and provides a tested framework for future ophthalmic research to be highly patient-relevant.
Undoubtedly, there will be barriers to effective patient involvement in medical research and these will require flexible and innovative approaches to be overcome. These...
Undoubtedly, there will be barriers to effective patient involvement in medical research and these will require flexible and innovative approaches to be overcome. These barriers exist from both a patient’s and clinician’s perspective. The most obvious hurdle is the disparity in subject knowledge between both parties and the potential for patients to feel isolated during discussion. Therefore, it is crucial that patient involvement is designed in a way that recognizes this, and provides adequate support either through training schemes or debriefing with expert members prior to meetings(3). There may be resistance from clinicians concerned that the need to accommodate patient understanding may restrict the scope of discussion. Other patient concerns include time commitment and logistical concerns such as travel reimbursements(3), both of which should be adequately addressed. Additionally, care must be taken when defining the patient recruitment criteria in order to ensure the volunteers are truly representative of the patient population concerned.
Ultimately, we applaud the efforts of this article in highlighting what is currently an inadequately tapped resource in the realm of ophthalmology, and we hope to see the ‘patient voice’ become an intrinsic part of future research.
1. Dean, S., Mathers, J., Calvert, M., Kyte, D., Conroy, D., Folkard, A., Southworth, S., Murray, P. and Denniston, A. (2017). "The patient is speaking": discovering the patient voice in ophthalmology. The British Journal of Ophthalmology, [online] 101(6), pp.700-708. Available at: https://www.ncbi.nlm.nih.gov/pubmed/28455280 [Accessed 20 Sep. 2017].
2. Burns, K., Rizvi, L., Charteris, A., Laskey, S., Batty, S., Chokar, K. and Choong, K. (2017). Characterizing Citizens’ Preferences for Engagement in Patient Care and Research in Adult and Pediatric Intensive Care Units. Journal of Intensive Care, [online] Available at: http://journals.sagepub.com/doi/full/10.1177/0885066617729127[Accessed 20 Sep. 2017].
Chalmers, J., Timothy, A., Polverino, E., Almagro, M., Ruddy, T., Powell, P. and Boyd, J. (2017). Patient participation in ERS guidelines and research projects: the EMBARC experience. European Respiratory Journal, [online] 13(3), pp.194-207. Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5584721/ - C1[Accessed 20 Sep. 2017].