Twitter as a tool for delivering improved quality of life for people with chronic conditions
The School of Health & Social Care (HSC)
R307 Bournemouth University
Bournemouth BH1 3LT
Telephone: 01202 962749
Aims and objectives. This article discusses the changing nature of healthcare to a more transparent personalised delivery model and examines the rise in the use of blogging and microblogging by people with chronic conditions. It then explores how the use of the microblogging tool Twitter could be effective as a means of delivering improved Quality of Life for people with chronic conditions.
Background. Global healthcare systems face increasing demands for better service and more information. Twitter is a free microblogging application providing users with the ability to communicate through the exchange of answers to the question: What are you doing? It has evolved beyond this base functionality to provide a variety of alternate uses, some of which are health related and which might offer opportunities in relation to improving health and quality of life.
Data sources. A thorough literature review of relevant journals, Internet sources and Twitter itself was undertaken. This looked at the use of microblogging tools for health-related subjects with a particular focus on chronic conditions. The review provided a comprehensive foundation for the paper; however, it is acknowledged that as this nascent technology is particularly fast moving, further advances and uses might have taken place since it was written.
Conclusion. Twitter is an ideal candidate for delivering and constituting improved Quality of Life. It could cultivate and inspire private, focused group conversations between people with chronic conditions and offer an effective targeted information channel for practitioners.
Relevance to clinical practice. Current definitions concerning the integration of health information and support with Web 2·0 technology are primarily concerned with approaches from a healthcare or medical perspective, which do not effectively consider how this might work from the viewpoint of the patient. There is a need to design a patient centered framework, encapsulating the use of Web 2·0 technology for people with long-term conditions who might want to support, mitigate or improve their own quality of life. This leads to questions as to which technology working within this framework might impact on health-related quality of life, how might it be satisfactorily measured and whether its use could be effectively translated into a noticeable improvement in the quality of life of individuals with long-term conditions.
Global healthcare systems face increasing demands for better service and more information. Twitter (2008) is a free microblogging application providing users with the ability to communicate through the exchange of answers to the question: What are you doing? It has evolved beyond this base functionality to provide a variety of alternate uses, some of which are health related and which might offer opportunities in relation to improving health and quality of life. This article explores how its use could be effective as a means of delivering improved Quality of Life for people with chronic conditions.
In the United Kingdom (UK), Lord Darzi, in his introduction to the Department of Health (DoH) report ‘High Quality Care for All’ (DoH 2008b) referred to an National Health System (NHS), which gave patients more information and choice, working in partnership and having quality of care at its heart. The idea of expert patients originated in the Department of Health (DoH) White Paper ‘Saving Lives: Our healthier nation’ (1999) with the DoH seeing involvement and empowerment as a vital ingredient to supporting decision-making processes within the NHS and UK social service provision. This was coupled with a perception that it would lead to a much higher demand for information about services and health improvement initiatives from an increasingly ageing population (DoH 2001a). For example, older people with chronic illness could become more involved in managing their illnesses and treatments and could pass on this knowledge and information to others through their local networks (DoH 2001b). More recently, in 2008, the Common Core Principles to Support Self Care report listed seven developed principles (DoH 2008a) aimed at helping health and social care services give people control over, and responsibility for, their own health and well-being, working in partnership with health and social care professionals. The principles were consistent with outcomes set out in the report ‘Putting People First’ (HM Government 2007) that people, irrespective of illness or disability, were supported (amongst other areas) to:
- • Live independently.
- • Exercise maximum control over their own life.
- • Have the best possible quality of life, irrespective of illness or disability.
- • Retain maximum dignity and respect.
In 2005, the Long Term Conditions (LTC) model was published (DoH 2005) providing a framework to help local health and social care communities improve the care of people with LTC. Three years later (Department of Health 2008a), it was acknowledged that people wanted services that would support them to remain independent and healthy and have increased choice. These views being considered when drawing up five high-level outcomes for people with LTC:
- • To have improved quality of life, health and well-being and enabled to be more independent.
- • To be supported and enabled to self care and have active involvement in decisions about their care and support.
- • To have choice and control over their care and support so that services are built around the needs of individuals and carers.
- • To be able to design their care around health and social care services, which are integrated, flexible, proactive and responsive to individual needs.
- • To be offered health and social care services, which are high quality, efficient and sustainable.
For the delivery framework, four areas of support for LTC (Case Management, Disease Management, Supported Self Care and Promoting Better Health) were identified to help create empowered and informed patients (Department of Health 2008a). It was also noted that some of the options that health and social care communities could use to support people with LTC could include sets of technological tools (Department of Health 2008a). These tools could be technology which:
- • Supported personalised care and choice.
- • Helped people to remain independent.
- • Monitored them remotely and sped up processes – promoting independence and detecting early changes and preventing deterioration.
- • Provided resources and support for patients to self care and self manage.
So from the perspective of UK healthcare provision, the shift has already begun moving towards a patient centric model with the intent to deliver care more efficiently whilst improving patient outcomes (Birnsteel 2008a). Darzi acknowledged that throughout his review (Department of Health 2008b) he had clearly and consistently heard that people wanted a greater degree of control and influence over their health and healthcare and thought this even more important for those who for a variety of reasons found it harder to seek out services or make themselves heard. Rising expectations are a combined consequence of DoH and NHS policy, societal change and the increase in the use of the Internet for finding health-related information coupled with the growth of social networking tools. Fox and Fallows (2003) found that Internet users were increasingly going to disease or situation-specific support sites and using email to discuss health issues, with 80% of US Adult Internet users having searched for at least one of 16 major health topics online. In 2006, Horrigan and Rainie (2006) found that over the three-year period since 2003, Internet use had grown by 54% for adults who said that the Internet played a major role as they helped another person cope with a major illness and those who said the Internet played a major role as they coped with a major illness increased by 40%.
Social networking tools offer the potential of supported learning, networking with peers, families and friends or sharing problems, processes and outcomes with a global community. In the UK, organisations like Patient Opinion and NHS Choices and systems like Healthspace – a secure online personal health organiser – have already successfully started using this technology to improve healthcare delivery (Birnsteel 2008b). In the US, healthcare consumers are already faced with greater responsibility for managing their healthcare with tools such as PatientsLikeMe (Birnsteel 2008b) being introduced to provide a means of managing and understanding chronic conditions.
Globally, Seeman (2008) was surprised to find that the largest proportion of the most popular communities on MySpace did not relate to entertainment, sports or politics – but to chronic illness. He also found that there were around 1200 Facebook communities advocating for cures for different chronic conditions. Elsewhere on the Internet, independent organisations like the Psoriasis Help Organisation (PHO) (2008) provide socially interactive web sites dedicated to helping people suffering from LTC. The PHO site contains information about treatments, tips for living with Psoriasis and aims to provide an informative and friendly environment to learn about the condition and exchange views and advice on how to live with and treat the condition.
This article discusses the changing nature of healthcare to a more transparent personalised delivery model and examines the rise in the use of blogging and microblogging by people with chronic conditions. It then explores how the use of the microblogging tool Twitter could be effective as a means of delivering improved Quality of Life for people with chronic conditions.
A thorough literature review of relevant journals, Internet sources and Twitter itself was undertaken. This looked at the use of microblogging tools for health-related subjects with a particular focus on chronic conditions. The review provided a comprehensive foundation for the paper, however, it is acknowledged that as this nascent technology is particularly fast moving, further advances and uses might have taken place since it was written.
A blog provides a unique method of publishing information online, similar to keeping a journal and writing entries. It can provide a continuous view of somebody’s situation, work, ideas, activities, progress, development or whatever they are interested in talking about. Entries – called posts – are normally short in length and are added regularly. Traditionally, journals have been private or secret affairs and were never linked to others, but blogs, contrastingly, are social in nature. In a survey of bloggers, Nardi et al. (2004) described different motivations for why people blogged. Their findings indicated that blogs were used as a tool to document life experiences, express opinions, provide a cathartic outlet for thoughts and feelings and offer a muse for thinking by writing. One respondent took over his wife’s blog to document the progress of her illness and treatment through text and photos when she became ill. Nardi et al. (2004) also described how bloggers formed communities online, which could support different social groups in the real world. People confined to hospital beds, people with rare disorders, people without transportation, or someone caretaking for a disabled person and not able to leave their side to attend a face-to-face (F2F) group can now find and connect to others like themselves, and share their experiences and strengths and coping strategies (Madara & White 1997). For chronic conditions like Diabetes, blog sources where people with chronic conditions can find information, support or just comment about their condition include Blogabetes (Guerin 2008) and Diabetes Mine (Tenderich 2008). Joyce (2008) has been writing a blog on Everyday Health (2009)– a site that offers support and information about treatment for and coping with chronic illnesses – detailing her experiences of living with Psoriasis by writing about her life.
A Microblog is a short blog post whose appeal is encapsulated in the ability to provide quick, immediate and portable communication. Microblogging is seen as a relatively nascent form of Web 2·0 technology with few studies having been performed (Java et al. 2007). Discussing the evolution of microblogging, Hanselman (2008) notes that the rise of blogs has brought conversations on the Internet out into the open. Blogging enabled conversation via essay, but as blogs have matured, posts have gotten longer and threads more difficult to follow. Now, he sees most posts as jumping off points for the more interesting conversations that appear in the user comments section below them. Java et al. (2007) maintain that by encouraging shorter posts, Microblogging lowers users’ requirement of time and thought investment for content generation. The other important difference is the frequency of update with on average, a blogger updating a blog once every few days whilst a microblogger might post more than several updates per day.
Twitter as an application
Twitter is an online microblogging application that is part blog, part social networking site and part Instant Messaging (IM) tool. It provides people with the ability to communicate through the exchange of quick, frequent answers to one question: What are you doing? Users have 140 characters for each post – called a tweet – to say whatever they wish. Many tweets answer this basic question, but others might be responses to other tweets, links to online resources the user found interesting, musings or questions. Educause (2007) notes that in line with social networking sites like Facebook – Twitter lets users create formal friendships, which collectively establish numerous and interconnected networks of users that can lead to useful professional or personal relationships with other users – called Twitterers. Unless Tweets are protected, they appear on a public timeline, which serves as an electronic pin board showcasing a constant stream of user postings (Codel 2006). Each tweet identifies the Twitterer, which links to that person’s profile page, showing all their previous tweets and friends’ tweets. Users can also send private messages to friends or post a direct reply to another tweet. In addition, Twitter works with mobile phones and other messaging clients, which make it an easy way for mobile users to stay in touch anywhere – by choosing to follow a user, you can be notified when a person posts a new tweet. Twitter integrates with blogs and also provides Really Simple Syndication (RSS), which allows news aggregators to subscribe to individual feeds. In many cases, a Twitterer is not an individual but a group of people, part of an organisation or an event.
Mischaud (2007) feels in its pure function, Twitter addresses an innate human desire to converse and to be heard so it is no surprise that people have appropriated it to reflect whatever use or style of communication they want. Nuttall (2007) described Twitter as the poster child of a new micro trend that has reduced the social networking tool to single sentences, pictures and the most everyday emotions and events. The relative ease of staying in contact through the use of a one-to-many application makes Twitter, one of the most popular and fastest growing communication platforms online (Pontin 2007). Hitwise (Arthur 2008) noted that traffic to Twitter has risen eightfold in the past year, more than doubled in the past three months and had gone up 60% in the past month. Twitter has also started to make interesting inroads into novel domains, such as helping during a large-scale fire emergency, providing updates during riots in Kenya and supplying live traffic updates to track commuting delays (Krishnamurthy et al. 2008). Black (2008) sees Twitter as a technology which may be emerging by stealth. Although Google is still the search engine of choice, he feels for specialist questions amongst a circle of friends (followers in Twitter terms) Twitter is a very powerful tool as it encourages short, targeted questions. Educause (2007) feels that many see the value of Twitter in keeping connected with a select group of colleagues and acquaintances through a shared space. For people who do not live in the same area, Thompson (2007) suggests Twitter creates a new channel of communication. It facilitates a new way of seeing and understanding people: although most individual tweets say very little, from following people over time users can develop a sense of who they really are and know at nearly any moment what they are doing and how they feel about it. Thompson (2007) sees the real appeal of Twitter as collectivist – users are creating a shared understanding larger than one person. He sees Twitter and other constant-contact media creating social proprioception, giving a group of people a sense of itself, making possible coordination.
Java et al. (2007) studied the structure of Twitter’s social network and from their analysis, found that user intentions on Twitter could be broken down into four categories:
- • Daily Chat– Most posts talk about daily routine or what people are doing.
- • Conversations– As there is no direct way for people to comment or reply to posts, early adopters used the @ symbol followed by a username for replies.
- • Sharing Information– Posts containing a link (due to the small character limit, a link shortening service like TinyURL (2008) is frequently used).
- • Reporting News– Many users report news or comment about current events whilst some post updates like news stories from RSS feeds.
Java et al.’s (2007, p. 63) study also revealed different motivations and use of microblogging platforms. Using the link structure, they noted the following main categories of users on Twitter:
- • Information Source– An information source was also a hub and had a large number of followers.
- • Friends– Most relationships fell into this category with many sub-categories of friendships.
- • Information Seeker– A person who might post rarely, but who followed other users regularly.
Twitter and people with chronic conditions
In terms of chronic conditions, Hernandez (2008) believes the biggest value of Twitter is the ability to write short posts about topics users would not normally feel compelled to blog about. In 2007, Scott Hanselman, a prominent diabetic technologist spent time twittering about his Diabetes (Hanselman 2007). He felt the experiment was designed to generate empathy and turn that empathy into action by spreading understanding. Ever since Hanselman twittered about his Diabetes, Hernandez (2008) considers that many new users have found value in the platform as a logbook-meets-decentralised Diabetes community. Through Twitter, he suggests users have the opportunity of connecting with other Diabetes technology twitterers or keeping updated with new posts made in their favourite Diabetes social network. Users also have the option of keeping information private and only sharing updates with those they feel comfortable with or keeping their entries entirely private but using the platform to log blood sugar values, meals and exercise. He believes that the platform becomes more useful as users grow the list of people they follow, as they can learn from what they do to better manage their Diabetes. For example, seeing an entry about random blood values every time a user ate potatoes (due to the starch content) could be a tweet a user could read and learn from. Other chronic condition sufferers are also making use of Twitter, like Rice (2008) who provides bite-size updates about his life including how he is living and being treated for Psoriasis.
The immediate ability of the web to provide increased access to diverse members and the nature of text-based relationships removes most of the influence of status, age and even gender and also gives access to peers who are experiencing disorders and conditions that do not have F2F groups. Finn’s (1999) study reported that there were 1·7 million people who were homebound in the US because of disability. In addition to their disability, they often had to cope with depression, loneliness and lack of social interaction. TuDiabetes (2008) is a social network for people touched by Diabetes that has over 3000 members taking part in a community where they can answer questions other members pose and share their stories. It has a Twitter strategy for building the followers/following lists with Hernandez (Ward 2008) explaining that:
When you take a look at the product of our ‘adds’ you see a very diabetes-centric timeline, which makes for a very interesting and inspiring reference. Also, we typically see people we add on Twitter joining the community.
Ward (2008) sees Twitter as a great avenue for cultivating and igniting conversations as well as making information available:
Twitter is another way organisations can be more open, transparent, and available in real-time to answer questions, provide information, and keep the community informed about both the work being done and ways to get involved.
SugarStats (2008a) is a web-based blood sugar tracker and Diabetes management system providing a web-based interface to track, monitor and access glucose levels and diabetic statistics to spot dangerous trends and better manage diabetic health. They recently announced Twitter integration with SugarStats (2008b) allowing users to quickly add entries concerning their blood sugar levels via Twitter direct message. Users could also choose to share their sugar information with their Twitter circle by enabling the option within SugarStats to have new entries posted to their Twitter account.
Educause reported that the most common criticism of Twitter is that it enabled inane interaction (Tweets which said nothing of importance). Moreover, as an asynchronous broadcast service, there is no guarantee that any individual tweet will be read or responded to. Twitter can also be a distraction for frequent and committed users and can be time consuming. If users interact with the site through a mobile phone, text message charges can accumulate rapidly and the sheer number of updates, particularly if you have a large number of friends or friends who are active users can be unwieldy. Others have raised concerns over privacy (Leader 2007) and its attack on users powers of concentration (Pontin 2007). Lavallee (2007) noted that multiple user intentions have led to some users feeling overwhelmed by microblogging services. Java et al. (2007) confirmed that based on their analysis, they believed that the ability to categorise friends into groups would greatly benefit the adoption of microblogging platforms and features that could help facilitate conversations and sharing news would be beneficial. Some of this functionality already exists in products like TweetDeck (2008), an application that aims to evolve the existing functionality of Twitter by breaking down feeds into more manageable sizes and allowing different sets of users to be grouped together by the user.
The management of using Twitter as a tool for health would need to be monitored so that possible risks for users were identified and mitigated. These would include helping individuals to develop effective structures for managing their online information, including information personal to them without invading their personal space. For practitioners, there would need to be a consideration of how it might impact on their practice and an understanding of how integrating it effectively and appropriately into design could be achieved sitting comfortably alongside existing and future DoH and practitioner policy. For example, in 2003, the national Primary Care Information Services (PRIMIS) programme worked with a number of Diabetes specialist teams to develop a minimum dataset, templates and analysis tools in preparation for the implementation of the National Service Framework for Diabetes (Watkins et al. 2003).
Relevance to clinical practice
Capel et al. (2007) identified less vulnerable, more active, older people as taking a self-help view about their health and social problems and sharing information within social networks. She noted research undertaken identified that social network support was a common source of help for older people. She felt that the Expert Patient programme (DoH 1999) had shown that older people with chronic illnesses could use their knowledge and experience in positive ways, becoming key decision-makers in the treatment process and developing their knowledge of their condition to a point where they were empowered to take responsibility for some of its management, working in partnership with health and social care providers.
Putnam (2000) concluded that the possession of social capital held great significance in terms of human wellbeing. He pointed out that it had been demonstrated to operate through psychological and biological processes to improve people’s lives, with mounting evidence suggesting that people whose lives were rich in social capital coped better with traumas and fought illness more effectively. In health-related terms, Hean et al. (2002) considered that social capital could be seen as the advantage gained by an individual or community as a result of being part of a social network. This could be an older patient given a lift to a surgery by her daughter or an isolated parent contacting friends to discuss the difficulties in coping with a young baby. Cowley and Hean (2002) proposed that there was increasing evidence from recent studies of social capital and health that community trust and networks could improve population health. Seeman (2008) believes that the emerging application of Web 2·0 to chronic illness – may be considered a proof of Putnam’s hypothesis that improved physical and mental health can result from generating social capital through increased networks of trust (Putnam 2000).
Pulman (2009) believes current definitions concerning the integration of health information and support with Web 2·0 technology are primarily concerned with approaches from a healthcare or medical perspective, which do not effectively consider how this might work from the viewpoint of the patient (and how they might already be using Web 2·0 technology or might want to adapt it in the future). He feels that there is a need to design a framework encompassing the use of Web 2·0 technology for the benefit of patients with LTC. A framework, which originates from the patient’s perspective, encapsulates the use of Web 2·0 technology for the benefit of patients who might want to support, mitigate or improve their own quality of life. Taking Donald’s (2001, p. 1) definition of Quality of Life as a starting point this framework could be described as:
Provision or use of a range of web 2·0 technology with the aim of improving an individuals Quality of Life relating to their emotional, social and physical wellbeing, and assisting with their ability to function in the ordinary task of living.
This leads to questions such as which Web 2·0 technology working within this framework might impact on health-related quality of life? How might it be satisfactorily measured? Could this technology be effectively translated and applied into a noticeable improvement in the quality of life of individuals with a particular chronic condition? Reflecting on the evidence and use of Twitter to this point and positing on how it could be used in the future, it would seem that Twitter may be an ideal tool that could be used for providing an innovative solution to the problem of delivering and constituting improved Quality of Life for people with chronic conditions.
For people with chronic conditions, Twitter allows easy access to users geographically displaced or unable to travel to document short posts about how they were feeling or ask questions of others. This could possibly cultivate and inspire private, focused group conversations between chronic condition sufferers. It could also provide an effective targeted information channel for practitioners to provide support materials.
Study design, data analysis, manuscript preparation: AP.