What is the problem with barriers to patient and public engagement in health research? A scoping review

Lauge Neimann Rasmussen*

*Corresponding author af dette arbejde


Engaging patients in health research presents challenges to all involved. These difficulties impede efficient, enlightening, and ethical research collaborations and are often framed as "barriers".

Barriers do refer to real problems that relate to time and resource constraints, logistical issues, the use of exclusionary scientific words, group and power dynamics, emotional strain, the organizational environment and more.

However, does framing these issues as barriers help us overcome the problems? Or could the notion of barriers, as currently used, be problematic in itself?

Take a commonly reported barrier: the costs of patient engagement. Supposedly, seeking funding is the way to deal with this barrier. Here, the problem and the solution are two sides of the same missing
coin. The value of such insight quickly diminishes.

To review the literature about barriers to engaging patients and the public in health research.

This review draws on scoping review techniques while following a hermeneutic approach. The review starts by characterizing and categorizing the broad literature concerning barriers, progressing to an in-depth analysis of the most relevant publications.

As of 27 May 2023, a search across MEDLINE, Embase, CINAHL, and PsycInfo yielded 1,012 publications. Out of these, 145 were selected for review.

For inclusion, publications needed to address barriers (using the specific term) to patient or public engagement in health research. Posters and abstracts were excluded. Non-English publications were translated via DeepL, and their relevance assessed based on the eligibility criteria.

The author commenced with a rough data extraction from all 145 articles to gain familiarity with the content. This informed the subsequent formal data extraction from 77 publications that stated an explicit focus on barriers in their research question or objective. When this poster was made, the author had also read 10 articles in-depth, forming a preliminary interpretation.

Selected data extraction Results
An upward trend is evident in the number of publications addressing barriers in recent years (see figure 1). The 77 papers are published across 51 distinct journals. Notably, the journal Research Involvement and Engagement published 16 of these papers.

Other results:
A definition of "barrier" was lacking in 71 out of the 77 publications.
Publication types:
Primary research: 27
Literature reviews: 19
Examples of projects: 12
Evaluations of projects: 11
Other: 8

Research and evaluation methods (multiple possible in one paper):
Interviews: 20
Questionnaires: 19
Focus groups: 7
Other: 20

Authors generally provide minimal to modest interpretations beyond basic topic summaries derived from their data. Relationships between barriers and specific facilitators or enablers are seldom explained and are not immediately apparent.

The stated intent with analysing barriers is to understand them and leverage this understanding, enhancing future engagement efforts. However, advice on how to deal with barriers tend to be vague and can occasionally appear at odds with other barriers and facilitators.

Yet, there are standout publications: one provides a rich narrative of barriers experienced by peer researchers, while another publication present a logic model that clearly refers to barriers and facilitators.

Overall, the analyses of 10 of the 77 publications indicate a somewhat fragmented puzzle that does not easily inform engagement efforts.

Engaging patients and the public in health research is difficult. This review seeks to critically assess whether the concept of barriers provides clarity and constructive guidance in addressing challenges, which may not be the case.

Subsequent analyses will encompass additional in-depth readings. Moreover, data will be extracted from the remaining 68 articles that touch upon barriers without making them the primary focus.
Publikationsdato31 okt. 2023
StatusUdgivet - 31 okt. 2023
BegivenhedCitizen Science 4 Health 2023 - Twente, Holland
Varighed: 29 okt. 20231 nov. 2023


KonferenceCitizen Science 4 Health 2023