Dyson Michele P, Shave Kassi, Fernandes Ricardo M, Scott Shannon D, Hartling Lisa
Alberta Research Centre for Health Evidence, Department of Pediatrics, University of Alberta, Edmonton, AB, Canada.
Clinical Pharmacology Unit, Instituto de Medicina Molecular, University of Lisbon, Lisbon, Portugal.
J Med Internet Res. 2017 Mar 16;19(3):e78. doi: 10.2196/jmir.6655.
With the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown.
The aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility.
We conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed.
During the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post.
Most participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.
随着技术的迅速发展及其在全球范围内可及性的提高，社交媒体在医疗保健领域正发挥着越来越重要的作用。患者经常使用社交媒体获取信息、分享内容，并在在线健康社区中与他人互动。然而，将社交媒体作为利益相关者参与策略的应用却鲜有探索，且让参与者参与以患者为中心的结局识别研究的有效方法仍不为人知。
本研究旨在评估利用社交媒体让家长参与识别以患者为中心的结局的过程，以儿童急性呼吸道感染为例来衡量其可行性。
我们对一项分两阶段的基于网络的策略进行了过程评估，该策略旨在让家长参与以患者为中心的结局研究。在第一阶段，我们创建了一个网站以及特定研究的脸书和推特账号，以招募家长完成一项基于网络的调查，识别以患者为中心的结局。在第二阶段，我们利用脸书根据调查结果与家长进行讨论。评估了社交媒体作为一种参与策略的覆盖面以及所招募人群的特征。
在第一阶段，调查网站有5027次访问，110名参与者完成了调查，553名独立用户访问了研究网站（675次访问），在为期14周的研究期间，脸书页面获得了104个赞，推特账号增加了52名关注者。大多数调查受访者将脸书（51.8%，57/110）或朋友（45.5%，50/110）作为其推荐来源。结果发现，70.0%（77/110）的受访者居住在加拿大，在城市中心（92.7%，102/110），88.2%（97/110）拥有大专或以上学历。出生年份中位数为1978年，90.0%（99/110）为女性。大多数调查回复（88.2%，97/110）在研究的第一个月内完成。在第二阶段，4名家长参与了讨论，我们的脸书页面增加了43名关注者，我们的帖子覆盖了5866名用户。与第一阶段类似，大多数关注者为女性（79%，34/43），年龄在35至44岁之间（49%，21/43），居住在加拿大（98%，42/43）。用户参与情况各不相同，在发布时间、主题或类型方面没有明显模式。
大多数参与者受过高等教育、居住在城市且为女性，这限制了多样性和代表性。大多数调查受访者的推荐来源是脸书或朋友，这表明人际关系在信息传播和接受方面的重要性。用户对基于脸书的讨论线程的参与不一致且难以启动。尽管人们对将社交媒体作为有效患者参与策略的一个组成部分有浓厚兴趣，但在参与者参与、代表性、获得支持以及所需资源等方面的挑战必须仔细考虑。
