Analysis of the online conversations among patients with Parkinson’s Disease suggests a need for pharmaceutical research to be targeted at treating the non-motor symptoms of the disease.
The authors found a broad consensus in the online conversations of patients with Parkinson’s Disease. Many cited a need for treatment and research to address non-motor symptoms like sleep disturbance, fatigue and nausea. One patient commented, ‘My tremor is nothing compared to the nausea and fatigue.’
The findings come as part of a unique study analyzing the online conversations of patients, patient advocacy groups (PAGs), and healthcare professionals (HCPs) in relation to the key priorities of research into Parkinson’s Disease.
The research found that addressing non-motor symptoms of the illness; the lack of understanding about symptoms of the disease in women; and providing training and education for HCPs to build multidisciplinary teams were the three main priorities discussed online by the different groups.
The study was produced by specialist digital insights consultancy, Creation Healthcare, who analyzed the conversations of more than 7,200 global online healthcare professionals (eHCPs) and their interactions with patients with the illness, and patient advocacy groups over the 12-month period 01 Sep 2022 and 01 Sep 2023.
The researchers hope the insights will allow pharmaceutical companies to succeed in launching treatments by better informing R&D strategy and identifying barriers to market.
Patients call for researchers to address the non-motor symptoms of Parkinson’s
In further evidence supporting their findings surrounding the increased need for research into the non-motor symptoms of Parkinson’s disease, the authors cite an X (Tweet) by Patrik Brundin, Head of Research & Development (R&D) at Roche, who asked what patients felt were the top three unmet medical needs. 11 of the 36 people (31 per cent) who publicly responded mentioned sleep disturbance.
In response to patients’ calls on the issue, Ingrid Estmann, a neurologist, argued that ‘we need to be bold, creative, out of the box and avoid easy road of motor outcomes.’
The lack of understanding of symptoms in female Parkinson’s patients
In addition, several HCPs expressed concern about shortcomings in the diagnosis of women with the illness.
Specifically, they highlighted that the symptoms in women are less well understood compared with men, resulting in late- or mis-diagnosis.
The authors argue that late- and misdiagnosis is likely to be a barrier to market for pharmaceutical companies investing in research and development in Parkinson’s Diabetes. They suggest that tackling barriers to early diagnosis could result in identification of patients with mild disease which could improve trial outcomes.
Patient advocacy groups stress importance of building multidisciplinary teams
Patient advocacy groups also echoed calls for awareness of non-motor symptoms of Parkinson’s Disease. Many also emphasized the need for improved training and education of HCPs surrounding Parkinson’s Disease and to build multidisciplinary teams.
Many healthcare professionals are aware they can support patient advocacy groups by amplifying their message online - nearly 1,200 did so (16 per cent of all HCPs active in the online Parkinson’s Disease conversation). Despite this, the authors argue there is scope for more engagement between these two groups.
They call on the pharmaceutical industry to seize the opportunity to connect with different stakeholders and to amplify their voice and champion the needs of patients more effectively.
Commenting on the study’s findings, Anni Neumann, Principal Consultant, said:
“The insights of this analysis are fascinating. They demonstrate how the conversation of online healthcare professionals and their interactions with patients and patient advocacy groups are a rich source of insight that can help pharmaceutical companies succeed in launching treatments by informing R&D strategy and identifying barriers to market.
“There was positive news from the study. It showed that many healthcare professionals are aware that they can support the work of patient advocacy groups by amplifying their messaging online. This was recognized by nearly 1,200 healthcare professionals - 16 per cent participating in the conversation. However, there is scope for this interaction to be enhanced.
“Poignantly, in the lead up to World Parkinson's Day on 11 April, John MacPhee shared a post on X (formerly Twitter) commenting that there is ‘lots and lots of noise, energy and commitment for World Parkinson’s Day, but it rarely breaks out of our echo chamber.’
“This research highlights how important it is for the pharmaceutical industry to engage with online platforms to monitor the responses of patients to the latest research being conducted.”