Patients internet blogs on INR self-testing content analysis

Size: px

Start display at page:

Download "Patients internet blogs on INR self-testing content analysis"

Loreen Parrish
7 years ago
Views:

1 Patients internet blogs on INR self-testing content analysis Dr S. G. Sarwar Shah MATCH - Multidisciplinary Assessment of Technology Centre for Healthcare Brunel University

2 Looking for information about health The Internet is widely used for information on health issues. Of those that use the internet, 71% used the internet at least once to find health information in 2011, compared to 37% in There are differences between next generation users (NGUs: those connecting to the internet using multiple devices) and first generation users (FGUs: those accessing the internet through a personal computer at home). 1 Oxford Internet Institute, Next Generation Users: The Internet in Britain

3 Web 2.0 and Social media Internet use has shifted to web 2.0 Multi-directional communication flows Interactive, dynamic, and collaborative Availability of user-generated content Social media is a group of internet-based applications and platforms that allows users to create and exchange content. 2 Examples - Blogs, YouTube, Facebook, Twitter and so on 2 Kaplan and Haenlein (2010), Users of the World, Unite! The Challenges and Opportunities of Social Media. Business Horizons, 53(1):

4 Social media and health How are social media platforms being mobilized around health issues? Professionals recruitment for clinical trials professional development and training for clinicians emergency and disaster communication public health messaging infectious disease monitoring product recalls Patients health social networks and health & illness support groups development of interactive, selfmanagement tools Formal complaints and patient feedback mechanisms

Why blogs? Blogs provide first person narratives from different communities e.g. patients, doctors, nurses and carers.

5 Blogs: what and why What is a blog? A webpage that is regularly updated with postings by blogger(s) in a dated order [14;15]. Why blogs? Blogs provide first person narratives from different communities e.g. patients, doctors, nurses and carers. Commercial companies, such as medical device manufacturers, are using blogs to elicit customers views on their products [15;35]. 5

6 Blogs as a data source An inexpensive and quick source of collecting actual primary data [25]. Ability to compile already available data existing in different forms such as text, audios, videos, images and so on [20]. Avoidance of the cumbersome and timeconsuming process of acquiring formal ethical approval for involving patients in direct primary research [16]. 6

7 Blogs as a data source Ethical issues Anonymity of the bloggers is normally assured [26]. Open access blogs- publically available data; no need for any approval prior to accessing the data [24]. Blogs with restricted access require membership and access rights. Blogs have been used as a data sources in several studies on different medical conditions [18-24]. 7

Limitations of blogs data Difficulty in selecting real patients, and identifying and excluding bloggers who may have a commercial interest for participating in blog discussions.

8 Limitations of blogs data Difficulty in selecting real patients, and identifying and excluding bloggers who may have a commercial interest for participating in blog discussions. Erroneous and misleading Information provided in some blogs [37] raising issues of the quality of blogs data [26]. Difficulty in verifying bloggers demographic details [32]; hence, inability to compare findings with a comparative population sample. Issue of biased sampling - access to the Internet is not available universally across all ages, gender and social classes [33]. 8

9 Aims and Objectives of this Study Aim: To use blogs to identify patients needs and experiences regarding INR self-testing / monitoring. Objective: To elicit patients' perspectives and experiences regarding INR selftesting using portable coagulometer devices for monitoring anticoagulation therapy with vitamin K antagonists. 9

10 Methodology Blogs search Selection of blogs - Google blogs search engine Searching blogs and posts by: Title Numbers of words, or at least one word, by the exact phrase URL Authorship Language Date 10

11 Google blogs search engine 11

12 Inclusion and Exclusion criteria Inclusion criteria Blogs written in only English language. Blogs posted from Jan 2000 to Oct Blogs by patients and/or their lay carers. Blogs that were currently active. Exclusion criteria Blogs written and posted by people other than patients, e.g. manufacturers, clinics, healthcare professionals. Marketing articles or promotional materials regarding PT/INR testing. Research studies based on primary and secondary research and literature reviews. Currently inactive blogs. 12

13 Keywords Keywords INR Patient Anticoagulation Monitoring Self-testing Point of care testing Oral anticoagulant Home testing Warfarin therapy Searched in Blog title Post title Post + Post title Post + Blog title 13

14 Ethics approval Ethics approval obtained from the Research Ethics Committee at the Department of Information Systems and Computing, Brunel University. Accessed only open access blogs that require no formal approval to access to the content of the postings. Data was collected and reported anonymously and at the group level rather than at an individual level. 14

15 Results Search hits and blog posts Main discussion groups Total hits blogs posts Selected 108 bloggers Mainly from the USA and the UK Pulmonary embolisms Deep vein thrombosis Heart valve replacement (HVR) INR selftesting equipment 15

16 Word frequency cloud 16

17 Main findings Qualitative analysis of the content of the collected blog postings resulted in the identification of seven themes: 17

18 Patient benefits 18

19 INR testing device issues 19

20 Hospital based INR testing 20

21 Interaction with healthcare providers and relevant others 21

22 Issues identified 22

23 Discussion Key points Analysis of Internet blogs is a challenging methodological endeavour. The range of issues covered in the blogs is sufficiently broad. The range of these issues from patients perspectives may determine their initial or continuing use of self-testing. Self-testing can be liberating from the drudgery of operating only with the traditional system of health services delivery. The complexities of developing an effective self-testing programme are substantial. Issues elicited in this study are very valuable for all stakeholders involved in developing effective self-testing strategies in healthcare. Analysing such blogs may prove to be a useful first step in the preparation of more detailed faceto-face studies using different methods. Blogs of patients may not provide information about technological issues about medical devices used for self-testing. 23

24 Conclusions Blogs are an alternative source of accessing experiences and unmet needs of patients and their lay carers, who would be very difficult to access through traditional methods of data collection. Blogs provide data about a wide variety of issues that are important to the end users (patients and their lay carers) of medical devices used for self-monitoring. Patients blogs can provide useful information that can be used for evaluation of selftesting medical devices. There are complex issues involved in the use of portable medical devices for selfmonitoring by patients with chronic medical conditions. 24

25 Acknowledgements This presentation is based on our study published as follows : This open access article is freely available at: 25

Objectives. Patient Background. Transitioning a Patient To & From a New Oral Anticoagulant

Objectives. Patient Background. Transitioning a Patient To & From a New Oral Anticoagulant Objectives Transitioning a Patient To & From a New Oral Anticoagulant How to switch from warfarin to rivaroxaban Discuss the Medicare donut hole How to switch from rivaroxaban to warfarin Home INR monitoring