Priority Setting

A guide to using priority-setting literature to do impactful work

Published on April 8, 2024

There are a variety of ways that researchers can ascertain where to direct their research questions. The field of priority setting attempts to determine the best allocation of researchers’ attention and resources to pressing health issues.1 There are a range of approaches to priority setting, including both quantitative and qualitative approaches. A tabular overview of three common approaches is provided by Leitch et al. 2023:2

" The field of priority setting attempts to determine the best allocation of researchers’ attention and resources to pressing health issues.”

" The CHIRON project team strongly recommends engaging with priority setting literature that intentionally includes patients and other relevant community members.”

Of note, not all approaches center patients, participants, and affected community members. Given our focus on affirming community interests and producing research that is fit for purpose to address the multifaceted health needs of communities, the CHIRON project team strongly recommends engaging with priority setting literature that intentionally includes patients and other relevant community members. For example, listed below are articles that utilize the approach of the James Lind Alliance for research priority setting on:

Inflammatory bowel disease (Hart et al., 2017)
Digital technology used in mental health care (Hollis et al., 2018)
Dementia (Kelly et al., 2015)
Type 2 diabetes (Finer et al., 2017)
Juvenile idiopathic arthritis (Aussems et al., 2022)

Another common approach to directly involving patients as participants is the Dialogue Model.3 This participatory approach has been applied to prioritize research agendas on:

Noonan syndrome spectrum disorders (Tiemens et al., 2023)
Hematological cancer (Schölvinck et al., 2019)
Parkinson’s disease (Schipper et al., 2014)

" The CHIRON project team discourages researchers from assuming that a given community’s priorities cannot be known or documented.”

Other qualitative approaches involving a spectrum of strategies to encourage deliberation among participants4 have solicited patient and community groups in research priority setting, including minority and underserved communities (Goold et al., 2018), women with urinary incontinence (Herbison et al., 2009), and incarcerated people in Australia (Simpson et al., 2021). Indeed, given the capacity for researchers noted above to successfully engage with “hard-to-reach” populations such as people with rare diseases, children, and incarcerated people, the CHIRON project team discourages researchers from assuming that a given community’s priorities cannot be known or documented.

Furthermore, academic literature is not the only source that researchers can consult in order to ascertain the desired research directions of patients and affected communities. Advocacy group statements, newspaper articles, and social media organizing all can provide insight. For instance, the AIDS Coalition to Unleash Power (ACT UP), perhaps one of the most notable patient advocacy groups, continues to release statements calling for the development of new, cost-effective therapies for HIV and a long-awaited cure. Advocacy organizations for those with poorly understood conditions may explicitly release research priority lists, like this one from the Ehlers-Danlos Society. Patient communities often have highly organized subreddits, Facebook groups, or Discord groups.

As was advised to the CHIRON project team during our community engagement studios, some caution is warranted when engaging with advocacy groups, especially those originating from social media, as it can be challenging for an outside researcher to understand the reputations and conflicts among groups. Additionally, patient groups may feel a sense of encroachment when researchers use their spaces to glean insights. As with our entire toolkit, we recommend ongoing relationship-building between researchers and community members to deepen and enhance research findings.

" As with our entire toolkit, we recommend ongoing relationship building between researchers and community members to deepen and enhance research findings.”

References

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