Department of Women's and Children's Health, Uppsala University, Uppsala, Sweden.
Gentleman Neuroscientist and Independent Parkinson's Patient Advocate, UK.
J Parkinsons Dis. 2021;11(s1):S5-S10. doi: 10.3233/JPD-202408.
Digital health promises to improve healthcare, health, and wellness through the use of digital technologies. The purpose of this commentary is to review and discuss the field of digital health for Parkinson's disease (PD) focusing on the needs, expectations, and wishes of people with PD (PwP). Our analysis shows that PwP want to use digital technologies to actively manage the full complexity of living with PD on an individual level, including the unpredictability and variability of the condition. Current digital health projects focusing on PD, however, does not live up to the expectations of PwP. We conclude that for digital health to reach its full potential, the right of PwP to access their own data needs to be recognised, PwP should routinely receive personalised feedback based on their data, and active involvement of PwP as an equal partner in digital health development needs to be the norm.
数字健康有望通过数字技术的应用来改善医疗保健、健康和健康水平。本评论的目的是回顾和讨论帕金森病(PD)的数字健康领域,重点关注帕金森病患者(PwP)的需求、期望和愿望。我们的分析表明,PwP 希望使用数字技术在个人层面上积极管理与 PD 相关的所有复杂性,包括该疾病的不可预测性和可变性。然而,目前专注于 PD 的数字健康项目并没有满足 PwP 的期望。我们得出结论,为了使数字健康充分发挥其潜力,需要承认 PwP 访问自己数据的权利,应该根据他们的数据定期为他们提供个性化的反馈,并且 PwP 作为数字健康发展的平等伙伴积极参与也应该成为常态。