Patients’ Priorities: It’s A Very Good Place To Start

By Meredith Bibbings, OBI Intern, Research

The most effective initiatives are responsive to the needs of those who stand to benefit from them. In research, this can mean understanding the patient, policy, commercialization, and care provider landscape. One of the emerging opportunities for researchers is to engage an increasingly interested public and patient community around their priorities for research that stand to improve quality of life and quality of care. Recognizing this, OBI is working with its partners to embark on a research priority setting exercise that may bring questions to the forefront for researchers to consider.

OBI supports five pan-Ontario research programs dedicated to patient-centred research. To better understand the top research priorities for individuals with neurodevelopmental disorders (NDDs), OBI and its research program focused on NDDs, the Province of Ontario Neurodevelopmental Disorders (POND) Network, are launching a Priority Setting Partnership with the James Lind Alliance (JLA). This partnership will enable the more than 300,000 children and youth in Ontario living with NDDs, along with their clinicians, caregivers and advocates, to have their voices heard by researchers.

In the case of POND, researchers are studying a wide-range of neurodevelopmental disorders:  autism spectrum disorder, attention deficit hyperactivity disorder, intellectual disability, obsessive-compulsive disorder, as well as Down syndrome, Rett syndrome, Tourette syndrome, and fragile X syndrome. Though these eight disorders can present with widely varied symptoms, they frequently co-occur and have been shown to have overlapping characteristics. This includes a shared problem in recognizing the emotional states of others, as well as anxiety, depression, and social isolation. Other common conditions include difficulty communicating, and deficits in executive functions like memory, decision-making, planning, and stopping impulsive behaviours. Addressing these varied but overlapping conditions requires individuals with NDDs to access an extensive care team. This includes the support of family doctors, as well as specialists in occupational and physical therapy, speech and language pathology, behavioural therapy, and other aspects of neurology, psychology, and psychiatry. Clinicians specializing in each of these areas will be asked to participate in the partnership in order to ensure that input is being gathered from the various perspectives of people who care for individuals with neurodevelopmental disorders. Recognizing that people with different NDDs often share many of the same symptoms, POND is pushing aside diagnostic categories and investigating common NDD biomarkers, and risk factors. POND’s mission is to find new, targeted therapies to improve the long-term outcomes for the individuals living with these disorders. By starting from the very beginning and asking patients, as well as their caregivers, which outcomes will most affect their quality of life so that POND research can better guarantee these targeted outcomes.

The JLA is the UK organization that pioneered Priority Setting Partnerships. It has run 30 successful partnerships, with roughly 30 more in progress. In the past, the partnerships have set research priorities for a wide-range of diseases and disorders, from kidney failure, diabetes, and cancers, to schizophrenia and depression. These patient-focused endeavours involve a well-coordinated effort. They begin with a steering committee and list of partners dedicated to creating and disseminating a survey to patients, families, caregivers, and health professionals. The diverse respondents contribute questions that they feel need to be addressed when it comes to improving the health and wellbeing of people living with a NDD.  These responses form a pool of thousands of potential research questions. If you would like to be a part of this endeavour, please learn more here.

Once the survey is complete, responses will be cross-referenced with questions that have already been answered by existing research literature. Importantly, questions that have already been answered by research are not ignored. These indicate a separate kind of communication blockade, and signal a need for targeted translation of knowledge to the community. Finally, a workshop will bring together up to 30 individuals to prioritize the responses into a top ten list. Both the committee and the workshop participants have equal representation of patients (or their advocates) and health professionals. The steering committee and JLA will ultimately publicize the ‘Top Ten’ list of research priorities, in order to ensure that patient voices are broadcast to researchers and the public. This also provides organizations that fund research an important opportunity to invest in research that is truly patient-centric.

OBI and POND are uniquely positioned to drive impact from this partnership. The supportive OBI framework underlying POND forms an ideal medium for re-dedicating research priorities to patients, since patients, caregivers, and patient advocacy groups are already guiding POND’s existing research as part of the involvement of the Patient Advisory Committee. They help advise the program in many ways, from the distillation and dissemination of research findings to strategies for recruiting patients for clinical trials. POND’s partnership with the JLA will carry this patient input back even further to the very beginning of the program’s process: the setting of research priorities. Secondly, while POND researchers can begin to tackle the top ten priorities, the existing OBI framework could help to catalyze their impact. Targeted knowledge translation, community outreach initiatives, and partnerships with industry are potential avenues for impact. Ultimately, there are many routes through which the POND-OBI-JLA-community partnership could produce change in patients’ quality of life. This might include impacting the prevention, diagnosis, treatment, and public awareness of NDDs.

OBI, POND, JLA and many community partners are working together to ensure future research is not only based on the best science, but also the best understanding of what is most important to the very people researchers are trying to help. The delay between identifying patients’ major concerns and connecting them with treatment is a complex issue to tackle, but this Priority Setting Partnerships may be researchers’ best shot at opening a line, of communication.

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