Involving patients and the public in nursing PhD projects: practical guidance, potential benefits and points to consider.

BACKGROUND: Funders, academic publishers and governance bodies increasingly require research to involve patients and the public. This also enables nurse researchers to increase the visibility of scholarly nursing roles, which are poorly understood by the public. There are different approaches to involvement, and a wealth of guidance about how it can and should be implemented. Less is known about how it should be done in the context of a nursing PhD. AIM: To discuss the experiences of the authors' nursing research group in involving patients and the public in PhD research, reflect on the benefits to be gained from doing so, and highlight considerations for those planning to involve patients and the public in their doctoral research projects. Discussion It is essential to decide in advance of a study who you will involve, how to reach them and why you are involving patients and the public. Some potential benefits of involvement are: more accessible documentation, refined methods and better research outputs created in collaboration with patients and the public. CONCLUSION: Patients and the public should be involved in nursing PhD projects. Not only does this improve the quality of the research and raise the profile of nursing research, but it provides the opportunity for students to learn skills that they can develop further throughout their academic careers. IMPLICATIONS FOR PRACTICE: Obtaining high-quality patient and public involvement is an important skill for nurse researchers. The first steps in acquiring this skill should be taken during research training.

An analysis of the diagnostic accuracy and peer-to-peer health information provided on online health forums for heart failure.

AIMS: To examine the accuracy of diagnostic responses and types of information provided on online health forums. DESIGN: Qualitative descriptive study. METHODS: This paper reports the findings of a thematic analysis of peer responses to posts included on heart failure online health forums, to understand the quality and types of information provided. Responses posted between March 2016 and March 2019 were screened, collected and analysed thematically using Braun & Clarke. Themes were conceptually underpinned by Normalization Process Theory. Responses were assessed for quality against the NICE and SIGN guidelines to determine whether they were evidence based or not. RESULTS: The total number of responses collected for analysis was 639. Five main themes were identified: diagnostic, experiential, informational, peer relations and relationships with healthcare professionals. Out of 298 diagnostic responses, 5% were guideline evidence-based and 6% had information that were partly evidence-based. Non-evidence based and potentially dangerous responses were 10%. Experiential responses were 10%; 23% included advice that was not supported with any clinical evidence; and 46% signposted users to other online references/healthcare professionals. CONCLUSION: Online health communication largely focuses on provision of experiential responses to assist those in need of pre- or post-diagnosis advice and support. However, there is evidence of inaccurate information provision which suggests the use of a moderator would be beneficial. IMPACT: This study suggests heart failure online health forums are a source of support, however, there are potential risks. Increasing nurses and other health care professional's awareness of online health forums will be important. Additional training is needed to help them learn more about patient's use of online health forums, to gain a better understanding about the types of information sought, and how best to address such knowledge deficits. Healthcare systems must ensure sufficient time and resources are available to meet information needs for people with heart failure.

Understanding the use of heart failure online health forums: a qualitative study.

AIMS: Heart failure is a major public health challenge and is described as an epidemic. Many people resort to the internet as a source of health information and online health forums have become an increasingly common way to obtain information and support regarding health-related issues. This study aims to explore what information people concerned about heart failure seek from online health forums, and how this shapes decision-making, trust, and interactions with healthcare professionals. METHODS AND RESULTS: Widely available internet search engines (Google, Yahoo, and Bing) were used to identify online health forums, accessed by people seeking information on heart failure. Comments posted between 2016 and 2019 were screened, downloaded, and analysed thematically. Normalization Process Theory provided the underlying conceptual lens to inform analysis. Ten online health forums were identified, and 204 individual posts analysed. Three themes were identified [(information and support needs; online diagnosis; and relationship with healthcare professionals (HCPs)]. The most common purpose for using online health forums was to plug information/knowledge gaps surrounding diagnosis or treatments (e.g. discussion of results, medication/health insurance queries). They were used as a tool to aid decision-making regarding, (i) whether to seek further medical attention and (ii) lifestyle choices, medications, and other advice surrounding concerns. Negative experiences with HCPs were discussed, and sometimes online health forums appeared to promote distrust with HCPs. CONCLUSION: Online health forums offer a supportive platform and help fill key informational gaps. However, online forums may amplify distrust with HCPs.

A mixed methods systematic review of the effects of patient online self-diagnosing in the 'smart-phone society' on the healthcare professional-patient relationship and medical authority.

BACKGROUND: As technology continues to advance, the internet is becoming increasingly popular. Self-diagnosis and health information seeking online is growing more common and it will be important to understand the influence this may have on the patient-healthcare professional relationship. METHODS: A mixed-method systematic review of quantitative, qualitative and mixed method studies concerning the public and healthcare professionals' perceptions of online self-diagnosis and health information seeking and how this can impact the patient-healthcare professional relationship. We searched MEDLINE, EMBASE, CINAHL, ACM & SCOPUS between 2007 and 2018. Relevant data were extracted, and a thematic analysis was conducted and conceptualised using the Normalisation Process Theory framework. RESULTS: Of 6107 records identified, 25 articles met the review eligibility criteria which included 16 qualitative, 8 quantitative and 1 mixed method study. The findings indicated that patients found the internet as a complementary information source alongside healthcare professionals. Health care professionals were perceived to be the most reliable and valued information source. People feel responsible for their own health and find the internet to be a source that provides information rapidly with accessibility at their convenience. Most healthcare professionals agreed on the importance of collaboration with patients and the need to develop a partnership and shared decision-making process but struggled to find time in the consultation to do so efficiently. Some healthcare professionals felt that the internet was advantageous for patients looking after their own health, while others felt it was due to a lack of trust in their expertise. Patients tended to present information to the healthcare professional to support the therapeutic relationship rather than to challenge it and to become more involved in the decision-making process of their healthcare. CONCLUSION: The results of this review suggests that patients value healthcare professionals as a source of medical advice more than the internet. While health professionals' views were mixed our findings indicate that online health information seeking can potentially improve the patient-healthcare professional relationship as patients reported they usually conducted an online search to form a partnership with the healthcare professional as opposed to trying to prove them wrong.