Une nouvelle étude portant sur les conversations Twitter liées au cancer du pancréas a révélé des taux élevés d’engagement parmi les patients, les défenseurs et les personnes non liées aux soins de santé actives dans le domaine du cancer du pancréas.
En examinant l’engagement avec le chat Twitter sur le cancer du pancréas, #PancChat, l’étude a révélé qu’un utilisateur sur cinq (20%) sont des patients, des défenseurs et des personnes non liées aux soins de santé. Cela suggère que Twitter est un outil de plus en plus puissant pour sensibiliser les fournisseurs de soins de santé, les patients et les soignants et leur diffuser des informations pertinentes sur les soins de santé.
La recherche a été lancée par le cabinet de conseil spécialisé en informations numériques basé au Royaume-Uni, Creation Healthcare, travaillant dans le groupe de défense de la collaboration Let’s Win! Cancer du pancréas et professionnels de la santé de premier plan. Les résultats font partie d’une étude collaborative publiée en mars 2022 dans le Journal of Medical Internet Research, une revue spécialisée dans la santé numérique et la science ouverte.
Utilisation d’un logiciel piloté par l’IA (Creation Pinpoint®), l’étude a analysé 313 668 mentions uniques de cancer du pancréas en anglais sur Twitter entre janvier 2018 et décembre 2019, en les classant dans l’un des cinq domaines thématiques suivants :
- La prévention (ex. dépistage et sensibilisation) ;
- Survie
- Traitement
- Rechercher
- Politique (ex. stratégie de santé publique).
The researchers then further divided these into those generated by healthcare professionals (27,031) and those by the general public (307,449).
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Further potential
Despite the high rates of use among patients and the wider public, the research suggests healthcare professionals active in pancreatic cancer have yet to fully embrace the potential of social media to raise public awareness of key campaign objectives during periods of heightened interest.
As part of the analysis, the report investigated the impact of notable events in the online pancreatic cancer conversation, such as the pancreatic cancer-related deaths and diagnoses of high-profile public figures and Pancreatic Cancer Awareness Month.
The study found that despite heightened activity and interest among the general public during these periods, healthcare professionals were not initiating conversations online in key areas, such as risk factors, including a family history of pancreatic cancer.
Pancreatic cancer awareness month
Pancreatic Cancer Awareness Month, it found, was not driving online engagement among healthcare professionals across any of the five key topic areas.
In contrast, online engagement among the general public was heightened during Pancreatic Cancer Awareness Month. However, this was only temporary and limited to just three of the five areas: treatment, research, and survivorship, not prevention or policy.
High profile pancreatic cancer diagnoses and deaths
The study found that, typically, these announcements would not affect conversations initiated by healthcare professionals but had a varied impact on conversations among the general public.
After Alex Trebek, host of the television show Jeopardy, received his pancreatic cancer diagnosis in March 2019, public mentions of survivorship increased. Former Supreme Court Justice Ruth Bader Ginsburg’s diagnosis increased conversations on treatment in August 2019.
However, the announcement of American singer-songwriter Aretha Franklin’s death in August 2018 did not result in changes in any of the five domains studied as a part of the analysis.
Overall
The study found that, overall, the Twitter discussions of healthcare professionals were not aligned with discussions initiated by the public.
Doctors most often discussed pancreatic cancer research (10,640/27,031 mentions, 39.4 per cent) while the public most often discussed treatment (154,484/307,449 mentions, 50.2 per cent). Policy drove the least engagement across both groups: 0.1 per cent of total mentions among healthcare professionals and 3.3 per cent among the public. The findings also showed healthcare professionals were more likely to initiate conversations related to research and prevention whereas the public took the lead in the domains of treatment and survivorship.
Commenting on the findings, lead author of the report and Associate Director of Insight at Creation Healthcare, Jamie Doggett, said:
“The findings of this study are positive and significant. They indicate a high level of social media engagement in the pancreatic cancer conversation on Twitter among clinicians, patients, and the public. Healthcare professionals and advocacy groups can leverage this social media engagement to raise awareness and gain valuable feedback to create an ongoing loop.
“The findings of the research also offer insight into how healthcare professionals and advocacy groups can optimise their digital engagement to further meet their broader campaign objectives, such as raising awareness regarding prevention, screening and early diagnosis.
“Stakeholders need to ensure conversations cover various attributes of pancreatic cancer care consistently, including preventative measures. Targeted tweets and conversations specifically related to pancreatic cancer may be essential in increasing discussions on cancer prevention and early identification.
“More broadly, it showcases the growing role of social media in helping to build a realtime communicative and collaborative platform that allows healthcare providers to involve patients in their care by sharing the latest research and developments.
“Ongoing analysis is also required. The information generated can be leveraged by stakeholders to design interventions to address deficiencies and improve communication in those specific areas in a focused manner. This knowledge will also add to the efficiency of targeted interventions such as tailored messaging, which may be used by healthcare organisations and advocacy groups to further augment dialogue around pancreatic cancer.”
Commentant les résultats, l’autre auteur de l’étude, Allyson J. Ocean, MD, présidente du conseil consultatif scientifique et cofondatrice de Let’s Win! Cancer du pancréas, a déclaré :
« Les résultats de cette étude offrent des informations précieuses pour tous les groupes de parties prenantes impliqués dans la lutte contre le cancer du pancréas, notamment les professionnels de la santé.
« D’une part, ils suggèrent que les professionnels de la santé peuvent exploiter Twitter pour diffuser des informations et recevoir des commentaires d’une importante communauté de patients et d’autres parties prenantes concernées.
« Mais les données suggèrent qu’il y a aussi plus de valeur à tirer de cette plateforme d’engagement en ligne. Cela est démontré par le manque d’engagement des médias sociaux parmi la communauté médicale entourant les décès et les diagnostics de personnalités publiques de premier plan, telles qu’Alex Trebek et Ruth Bader Ginsburg.
«Nous savons par expérience que les diagnostics de cancer des personnalités publiques ont influencé le comportement du public lié au cancer. Le diagnostic de cancer du côlon du président Ronald Reagan, par exemple, a entraîné une augmentation du nombre de coloscopies effectuées sur des personnes asymptomatiques.
« La communauté médicale, en particulier celles impliquées dans le traitement et la recherche sur le cancer du pancréas, doit faire plus pour saisir ces opportunités afin de faire avancer les priorités des communautés de soins de santé, telles que la sensibilisation aux symptômes et aux facteurs de risque.
