We believe that prioritizing research by establishing research priorities jointly with clinicians and patients – priority setting partnerships (PSP) – should have growing importance and interest in our setting.

Alessandro Liberati, a prominent Italian physician–researcher and founder of the Cochrane Centre in Italy in 1994, died from multiple myeloma.1 As a patient, but with the perspective of his prior experience as a researcher, he emphasized a troubling disconnect between what clinicians study and what patients need. He also highlighted the mismatch between research priorities driven by industry and academia and those that are truly relevant to patients.

Typically, those who set research priorities are those who fund it (research agencies and the pharmaceutical industry) and those who compete for that funding (investigators). On the one hand, this can favor research oriented toward generating results advantageous to the pharmaceutical industry – for example, promoting effectiveness studies of new drugs vs placebo, or single-arm effectiveness studies without a comparator, instead of more ambitious head-to-head comparative studies that could reveal that expensive new drugs are no better than older, lower-cost alternatives, when what clinicians and patients most want to know is which currently available drug is most safe and effective. On the other hand, it can tilt priorities toward basic and translational research over clinical and epidemiologic research, because many funding agencies and journals are more oriented to basic and translational work, which may be more readily publishable. However, this may be far from what patients most need for their disease and what clinicians most need when making decisions in our office.1,2

For these reasons, it could benefit everyone if priority research agendas were reevaluated and realigned with the actual needs of patients, caregivers, and health professionals. This approach seeks to optimize resource use by directing efforts toward areas that directly and meaningfully impact patients’ health (which, ultimately, concerns us all).

To set priorities through a PSP, one first explores areas of need in a given disease or topic with participation from a group representing clinicians, patients, and other stakeholders (such as family members and caregivers). The group then compiles uncertainties and examines the existing evidence about them: the questions must be ones that cannot be answered with current evidence and that matter to all groups. After generating a provisional list of priorities, the group holds a meeting to agree on a final list (usually a Top 10) of priorities considered essential for research in the area. Finally, periodic updates of the list and appropriate follow-up are required.

The methodology proposed by the James Lind Alliance (JLA) is summarized in Table 1.3,4

Applying PSP methodology has had tangible effects in dermatologic practice. One example is the work by Dávila-Seijo et al., who addressed prioritizing therapeutic uncertainties in dystrophic epidermolysis bullosa. By creating a PSP that included patients, caregivers, and health professionals, they produced a list of research questions considered most critical to improving clinical management of the disease.5 Subsequently, it became clear that research at that time (more genetics-oriented) did not address the main priorities of patients and frontline clinicians,2 which led to changes in international DEBRA (Dystrophic Epidermolysis Bullosa Research Association) funding calls, prioritizing research on how to relieve children's suffering during wound care. Another experience, led by Hernández-Martín, focused on ichthyosis and identified ten priority areas for research.6 Recently, the Spanish Hidradenitis Suppurativa Registry of the Spanish Academy of Dermatology and Venereology7 was developed to address several of the questions JLA had designated as priorities (Table 2).8 Another valuable account is from Amanda, the mother of a child with severe atopic dermatitis, who actively participated in the JLA eczema PSP, where she helped define and prioritize the most relevant research questions from the patient perspective.9

Beyond dermatology and research, these methodologies can aid the humanization of clinical practice. A paradigmatic example is the Patients Changing Things Together (PATCHATT) ethics pack, a tool created to support inclusive ethical decision-making that has enabled people with terminal illness to lead meaningful changes in community care planning.10

Engaging patients from the earliest stages of projects and considering their input before launching them is essential to aligning research with the real needs of those affected.11 Establishing future PSP initiatives within Spain's national health system will require creating collaborative platforms where these stakeholders identify and prioritize research areas together with clinicians and investigators, following models such as the JLA.

While including patients and clinicians in decision-making is unquestionably valuable, it is not without challenges. One is the potential interference of researchers’ individual preferences and the pressure to deliver results.12 As Liberati noted in 2011: “If we want more relevant information, a new governance strategy for research is needed. We cannot expect researchers alone to resolve the current mismatch. Researchers are trapped by their own internal interests – professional and academic – that compete with each other.”1 Ensuring adequate representation of patients’ interests can also be difficult.

Another hurdle was seen in the epidermolysis bullosa study, where it was hard to assemble a representative participant group due to the disease's rarity and the need for international coordination.5 Even so, examples like this suggest that, especially in rare diseases, conclusions are likely generalizable to other settings without replicating similar efforts in different geographic areas.

Once priorities are set, it is also worth reflecting on how research is executed. As Roberts points out, the medical literature contains a biased sample of trials, which means systematic reviews inherit those biases. Moreover, when trials are identified, selective outcome reporting undermines validity because the literature includes many limited-quality studies (single-center, small samples, etc.), which continue to be promoted and published.13 In some cases, research may be poorly executed partly because investigators lack certain methodological skills. Added to this, institutions rarely provide adequate methodological support, leading to grant applications and studies that sometimes fail to produce meaningful results – wasting time and resources.

Using PSPs when designing studies, securing appropriate methodological support for planning and conducting research, and working in a coordinated fashion could further accelerate Spanish (and global) research in the coming years2 and generate results with greater impact on patients’ health and quality of life, while improving efficacy.

In conclusion, it is essential to raise awareness of this method, to encourage more dermatologists to use results from existing PSPs and participate in new ones, and to align research objectives as closely as possible with established priorities. Research within the PSP framework will help reduce wasted research resources. As Hywel Williams recently emphasized in a British Journal of Dermatology editorial, what is needed is not “more research,” as many studies often conclude, but “less, but better – prioritized, well conducted, and fully reported.” Patients deserve no less (and recalling Liberati: we deserve no less).14

None declared.

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