Health Research from Home: advancing population research using smartphones and wearables

许多患者和公众愿意，而且往往热衷于为健康研究做出贡献。如果研究涉及个人重要性的问题，并导致明显的公共利益，这一点尤其如此。不幸的是，参与研究并不总是那么容易，因为在工作日期间需要出差去诊所等实际挑战。智能手机和可穿戴设备为患者和公众提供了一个新的机会，让他们在舒适的家中为健康研究做出贡献。对于患者来说，这可以使参与更容易，并允许更多的人参与。对于研究人员来说，它提供了一个令人兴奋的新数据源，允许解决以前无法回答的重要问题。机会包括更频繁地测量事物：例如，通过Zoe COVID Symptom Study智能手机应用程序记录大流行期间的日常症状，使我们了解嗅觉丧失是COVID-19感染的一个重要且具体的症状。消费者技术也使研究人员能够更准确地测量事物。这可能包括使用智能手机或腕戴式设备中的传感器来测量您的活动如何响应您的疾病或新治疗。这种直接来自公众的新型数据如果与其他数据相结合，例如健康记录中的临床团队提供的信息或捐赠用于研究的遗传血液样本，可能会更加有用。然而，使用智能手机和可穿戴设备成功进行健康研究的数量仍然很低。这是因为它是新的和困难的。它要求研究团队同时克服许多障碍。例如，他们需要设计研究，使患者感兴趣，可以简单轻松地参与，并随着时间的推移保持参与。他们需要找到合适的技术合作伙伴，以帮助他们了解设备可以测量什么，以及如何以最佳方式做到这一点。他们需要确保所有数据在从设备转移到计算机存储时保持安全，以便进行分析。他们需要了解如何最好地分析和解释这种新的连续数据流。我们的合作伙伴基金正在汇集使用智能手机和可穿戴设备进行成功研究的研究人员。我们打算汇集我们的经验，并与更广泛的研究界分享。我们将通过举办一系列活动来做到这一点。这些将描述那些进展顺利的研究，以及那些没有成功的研究，以分享经验教训。我们将定期举办在线会议和年度活动，使整个社区能够相互交流和学习。我们将举办“免预约”诊所，为患者和公众提供有关合作伙伴关系的建议和支持，以及如何最好地安全可靠地进行研究。我们将支持研究人员为未来的研究制定强有力的投标，并将每年举办挑战赛，以改善我们分析这些连续数据流的方式。我们将在活动中分享所有这些学习，并将其存储在网上（例如作为文档或短视频），供任何人随时访问。我们还将开展两个处于家庭健康研究前沿的项目，这些项目需要将智能手机和可穿戴设备的数据与其他健康数据关联起来：一个是关于了解膝关节置换术后的身体活动模式，第二个是关于长期健康的结果长期新冠肺炎。这些项目将回答临床上重要的问题，同时提高我们对如何最好地进行此类研究的理解。总之，我们的目标是建立新的伙伴关系，建设这一重要领域的能力，并进入新的、技术上困难的领域。我们将开发一个熟练和可持续的社区，在未来，他们将使公众能够通过使用自己的设备来帮助回答许多对他们来说很重要的问题。

Many patients and the public are willing, and often keen, to contribute to health research. This is especially true if the research addresses questions of personal importance, and which lead to clear public benefit. Unfortunately, taking part in research is not always easy with practical challenges like travelling for clinic visits during a working week.Smartphones and wearables provide a new opportunity for patients and the public to contribute to health research from the comfort of their home. For patients, this can make participation easier and allows more people to take part. For researchers, it provides an exciting new data source, allowing important questions to be addressed that have previously been unanswerable. Opportunities include measuring things more frequently: for example logging daily symptoms during the pandemic via the Zoe COVID Symptom Study smartphone app allowed us to understand that loss of smell was an important and specific symptom of COVID-19 infection. Consumer technology also allows researchers to measure things more accurately. This might include using sensors within your smartphone or wrist-worn device to measure how your activity is changing in response to your disease, or following a new treatment. This new type of data that comes direct from the public can be even more useful if combined with other data, such as information provided by clinical teams within health records, or genetic blood samples that have been donated for research. The number of successful health research studies using smartphones and wearables, however, remains low. This is because it is new and difficult. It requires research teams to overcome lots of barriers simultaneously. For example, they need to design the study so patients will be interested, can take part simply and easily and remain engaged through time. They need to find the right technology partner to help them understand what can be measured with the device, and how to do that in the best possible way. They need to ensure all the data remains secure as it moves from the device to computer storage ready for analysis. They need to understand how best to analyse and interpret this new continuous stream of data.Our Partnership Grant is bringing together researchers who have all conducted successful studies using smartphones and wearables. It is our intention to pool our experience and share it with the wider research community. We will do this by running a series of events. These will describe studies that have gone well, as well as those that haven't, to share lessons learned. We will host regular online meetings and annual events that will allow the whole community to meet and learn from one another. We will host 'walk-in' clinics providing advice and support about partnership with patients and the public, and how best to conduct research safely and securely. We will support researchers to develop strong bids for future research, and will run annual challenges to improve the way in which we can analyse those continuous data streams. We will share all of this learning at the events, and will also store it online (eg as documents or short videos) for anyone to access any time. We will also run two projects at the cutting edge of Health Research from Home which require data from smartphones and wearables to be linked to other health data: one on understanding patterns of physical activity after knee replacements, and the second on long-term health outcomes of Long COVID. The projects will answer clinically important questions and simultaneously enhance our understanding of how best to conduct such studies. Taken together, we aim to establish new partnerships, build capacity in this important area and advance into new, technically difficult areas. We will develop a skilled and sustainable community who will, in the future, be enable the public to help answer many of those questions that matter to them through the use of their own devices.