Better informed patients = Better health outcomes – Spirit Group supports presentations on the gaps in information provision at PM Society Patient Engagement Interest Group event
The PM Society’s Patient Engagement Interest Group (PEIG) hosted an insightful educational event at the Royal Society of Medicine in London on 27 November. The event gave the PEIG the opportunity to present the fascinating results of recent surveys of the views of doctors and patients alike.
Denise Silber, the Founder of Doctors 2.0 and You opened up proceedings on the day by reminding attendees that patient engagement is not a new concept.
Discussions about patient engagement started many years ago, with an initial focus on the important role of patient advocacy to represent the patients’ voice. Since then many more terms have been used, including e-patients, patient-centred care, patient engagement and participatory medicine. Many fantastic initiatives are now in place that really focus on patient involvement at all stages of their healthcare journey, but there is still a lot more to do, especially for more difficult to reach patient groups such as the young, the elderly and those with lower levels of literacy.
Assessing the health information needs of patients, caregivers, relatives and friends
One of Spirit Group’s Senior Scientific Directors, Nikki Kendrick, an active member of the PEIG, supported with a fully collaborative PEIG workstream survey that was circulated via the talkhealth platform and also distributed through the PEIG members’ own social media networks.
Spirit Group teams and their contacts also responded to the survey, providing their own personal insight on their information preferences either as carers or even patients themselves. Nikki co-presented the initial results of the survey (from 510 fully completed surveys) focusing on analysis of the quotes obtained through the open text fields. Overall, the online survey reported that those seeking health information did so on a regular (weekly/monthly) basis and most typically using technology, such as internet searching and mobile apps. Although as Deborah Wyatt pointed out in her presentation, this was an online survey! Despite being technically competent in using online sources, respondents still reported that they found many sources they searched out themselves either unhelpful or conflicting, adding to their confusion and causing frustration.
The information sources deemed most and least helpful amongst the survey respondents were:
The majority (43%) turned to online information sources because they felt they provided the most convenient and easy to access information. But they often doubted how trustworthy the information is and preferred getting information from their own doctor if that was possible. However, they were also aware of the time constraints in the health service system. Receiving direct communication with a personal touch was preferred by 22% of respondents.
Survey questions about the best types of information demonstrated clearly that no one type ticked all of the boxes for all people and so information should be provided in a variety of ways so that patients can have choice.
The survey also confirmed, amongst a smaller group of respondents who answered this section, that patient stories and local support, lay summaries of recent research and a system for access to experts on-demand would be very useful. The message seemed to be that even complex information was welcome and not to be avoided, although it should be presented in a clear, concise and straight forward language – just plain English!
In closing, both presenters confirmed how the results of the survey will really help in fine-tuning how all stakeholders, including the pharmaceutical industry, should approach the development of patient engagement strategies. The full results of the survey will be published in a PEIG White Paper after which the PEIG workstream will assess next steps e.g. the development of paper-based surveys, and other key areas that would warrant further investigation.