Fig. 1 Preventer, Reliever and volumetric. With good adherence the ‘brown one’ is taken as prescribed and the ‘blue one’ rarely needed. With poor adherence there is no brown on and there is dependence on the blue one. In this example a QVAR easibreather and a Venotlin inhaler. Mine. 

By presenting these ideas here I asking for support on how to make this research happen.

The medical profession is replacing the term ‘adherence’ with the term ‘compliance’. This reflects the desire to encourage self-management of prescribed drugs in concordance with health care providers (HCPs). For the purposes of this paper the terms should be considered interchangeable.

Asthma is a chronic and complex condition affecting the lungs that can be managed but not cured. (NHS Choices, 2013) (See Appendix 1 for a definition of ‘moderate to persistent asthma’). The World Health Organisation estimates that 300 million people globally are asthmatic (Web, 2001) while in the UK in 2010 5.4 million people were receiving treatment for asthma and there were 1,143 deaths. (Asthma, UK. 2013) An estimated 75% of hospital admissions for asthma are avoidable and as many as 90% of the deaths are preventable. (Asthma, UK. 2013) 80% compliance is the minimal level required for treatment to be effective (Lasmar et al., 2009).

Research construct

Asthmatics form a heterogeneous group that shows great diversity of triggers, effective medication, management strategies and outcomes. Research clusters asthmatics into four to six groups based on how they present and the drug regime they are on (Webb, 2011). Isolating a participant’s conditions and being confident that their medication is correct will be a challenge. For this reason, thorough in-depth interviews with participants, potentially with an HCP present, will be vital in order to set a benchmark.

A team at Harvard Medical School designed Qstream, the proposed e-learning platform (Kerfoot et al., 2008). Qstream (Fig.1.) takes its approach from an understanding of Ebbinghaus (Ebbinghaus, 1913) and how we forget and remember to provide a spaced-learning response that uses a combination of email alerts and interactive content to build knowledge. Its use has been researched with junior doctors in relation to their formal medical training and assessment (Kerfoot et al., 2008; Kerfoot et al., 2012) and in applied settings with healthcare practitioners to support informed decision-making. (Kerfoot et al., 2010)

Fig.1. Screengrab from Qstream homepage. (www.qstream.com)

On the basis of their research, Dr B Price Kerfoot says that ‘educational games work’ (Kerfoot et al., 2008. Kerfoot suggests that the next step is to use this approach with patients and ‘clinical decisions of greater complexity’ Kerfoot (2010:477). Research using Qstream involving people with chronic illnesses is planned to take place in North America in the Fall of 2013 (Vernon and Kerfoot, 2013).

What is the problem?

Too many people with a chronic illness, such as asthma, fail to take their medication as prescribed (Royal Pharmaceutical Society (RPS) of Great Britain, 1997; Hayes et al., 1979). This can lead to an exacerbation of the disease, risks hospitalization and even death. Non-compliancy rates are between 10-60% (Cochrane, 1992. Rand,1994), 30–50% (Horne, 1999), 50% (Di Matteo, Giordani, Lepper & Croghan, 2001; Kyngas, 2007 in Wales et al., 2011:148).

Reasons for non-compliance include medication side effects, expense of treatment, personal value judgments or religious or cultural beliefs about the proposed treatment, age–related debility, not having an action plan prescribed by an HCP, the patient not following the adequate treatment prescribed (Cerveri et al., (1999:288) or the presence of a mental disorder (e.g., schizophrenia, personality disorder).  American Psychiatric Association [DSM-5], (2013:726).

What is the opportunity?

According to McGavock et al., (1996) efforts to improve compliance have been unsuccessful; it is hoped that efforts using e-learning will be successful. The healthcare community – manufacturers, prescribers and frontline carers, recognise that education offers a way to reduce hospital admissions and deaths (Cerveri et al.,1999:288). The opportunity exists to increase compliance to 80% and therefore improve the health of millions of people with asthma.

A variety of programmes have tested a potential solution to non-adherence. (Byer & Myers, 2000; Hand, 1998; Tettersell, 1993), while Hacihasanoğlu and Goözuöm (2011) showed that patient education on medication adherence is effective. A variety of studies on e-learning in healthcare have used emails linked to multiple-choice questions and answers to improve patients’ knowledge and behaviours (Volpp et al. 2009; Kato et al. 2008).

The hypothesis

The hypothesis is that as a result of greater compliance through a ‘spaced learning’ e-learning education programme, non-compliant moderately persistent asthmatics will show changes in measurements of their illness and changes in their medication beliefs. (Based on Petrie et al., 2012:76).

Desired outcomes / results

Having completed a programme of e-learning using Qstream people with moderate to persistent asthma who had been noncompliant (under 80% compliant) should show changes in their illness and medication beliefs, improved compliance to their preventer inhaler and measured improvement across a range of physiological measures. (Based on Petrie et al., 2012:76) As a result of what they learn, the research will address patient perceptions, such as beliefs (Horne & Weinman, 2002), worries about long term use of steroids (Apter et al., 2003), fears and other concerns (Kaptein, Klok, Moss-Morrs & Brand, 2010). For example, 28% of asthma patients think that drugs are bad and not necessary while 12% think that drugs may not be not bad but aren’t necessary. Cerveri et al., (1999:292).

Achieving a reasonable level of compliance with treatment regimes has been shown to improve the health outcomes of patients undergoing treatment and reduce demands on health resources (Bender, Milgrom, Wamboldt & Rand, 2000; Dunbar-Jacob, Burke & Puczynski, 1995).

The long-term and broader opportunity exists to reduce hospitalizations, reduce costs, improve and extend lives.

Learning Theories

The learning theories that form the basis of Qstream are behaviourist (Skinner, 1974) and cognitive (Wenger, 1987; Hutchins, 1993; Anderson, 1983; Piaget, 1952) with problem solving, explanations and re-combinations. In line with this behaviourist approach early versions of Qstream worked best in formal learning contexts, for example first year medical students needing to pass an exam on anatomy. (Kerfoot et al., 2008) and practical clinical guidelines (Kerfoot et al., 2009). By complementing traditional medical training, with clear goals and the motivation to pass, the attraction of the platform are clear in this context. This stimulus-response approach, builds on the work of Ebbinghaus (1913) (Fig. 2)

Fig. 2. A typical forgetting curve for newly learned information. After Ebbinghaus (1913)

Through association, the learner takes a number of steps to build a composite skill. (Skinner, 1984; Gagné, 1985) (Fig.3) An accurate reproduction of knowledge can be assessed or demonstrated in drill and practice.

Fig.3. Screengrab from Qstream showing how a participant receives feedback on their response to a multiple-choice question.

Later and current versions of Qstream include components of peer competition, participant interaction and collaboration. This constructivist approach takes the view that learners build their own structures (Piaget, 1954). It also suites task orientated learning (Bruner, 1993) and assimilative learning. This constructed and socio-constructed approach to learning is less suited to assessment simply by looking at exam grades, therefore in-depth interviews or comprehensive self-reporting surveys are required to elicit what took place and the level of knowledge attained especially as evidence of learning by people with asthma won’t be elicited through formal assessment.

Why undergraduates?

The research shows that younger asthma patients in the age 14-25 years are less likely to use their preventer medication than older patients (Diette et al., 1999; Legorreta et al., 1998), which makes ‘young people an important group to target for improving adherence and reducing their underuse of preventer-inhaler corticosteroids’, (Pertie et al., 2012:75). For this reason, and to exploit study parameters of population size and geography, a university undergraduate population is proposed.

METHODOLOGY/METHODS

A mixed-method approach will be adopted with qualitative and quantitative components. In-depth pre and post intervention interviews will form the qualitative element, while the quantitative component will be based on several hundred student participants taking part in a randomized controlled trial and use analytics generated by the Qstream platform. The aim is to interview approximately 30 students in-depth within the parameters of a single university. For example, Adams, Pill & Jones, (1997) favoured in depth interviews with a carefully selected and eligible number of patients before and after intervention. For quantitative analysis the far larger pool of participants will be drawn from a UK wide undergraduate student population using platforms such as The Student Room (www.thestudentroom.com. The Student Room, 2013) and Asthma UK to recruit participants. According to Kerfoot & Baker (2012) an individual randomized control trial is preferable were there is a large sample size. Extending to a sample of four UK universities might increase the potential number of participants to 9000+ (See Appendix 2). Self-reporting screening would be used to ensure that only those in the desired group took part.

Based on UK statistics on asthma in the population, it can be calculated that at, for example, the University of Southampton from a total undergraduate population of 17,000 there are likely to be between 485 and 586 students with moderate to severe asthma. (This intentionally excludes those likely to have a mild form of the disease, and those with a profoundly severe form of the condition). (See Appendix 2 for break down of likely respondents). Asthma UK (2013) suggests that amongst asthmatics 48% consider themselves to be at risk. If this percentage of potential participants volunteered then the starting population for the proposed research is likely to be around 250. It is reasonable to suggest that by working with four different universities of a similar size the total population for a randomized control trial would increase to 1,000.

Identifying those who are moderate to severe asthmatics and agreeing criteria has confounded asthma studies in the past, therefore great care will be required to set parameters, the simplest being that where an asthmatic has been prescribed only two medications, a preventer inhaler (known as the ‘brown one’) and the reliever inhaler (the ‘blue one’) that their condition is considered to be ‘moderate to severe’.

Having a sound basis for giving a person’s baseline, for both compliance and knowledge of asthma and how it is treated, will indicate if an improvement in adherence has been made and whether this e-learning approach has been effective.

To have a physical measure you can audit the prescriptions issued or weigh the inhalers to establish how much has been expelled, however Spector (1985) found cases of both miss-application and trial firing.  A blood test is definitive, but this could only be carried out by an HCP. The alternative is to ask patients how they got on, however patients are thought to overestimate their actual drug use by between 30 and 50% (Spector, 1985; Sacket and Snow, 1979). In the case of people with asthma, Horn (1992:126) found that 11% who claimed to have inhaled salbutamol in the preceding four hours had no detectable drug in their urine.

Whilst therefore there are advantages in conducting interviews, patients are giving a subjective measure of their treatment compliance (Sawyer, Rosier and Phelan, 1995). This method suffers from being the most inaccurate of any available (Horn, 1999:126), however the alternative requires a series of tests that need to be administered by an HCP.

This ethnographic investigation would be open and exploratory  (RPS, 1997). A system of meanings would be taken either from transcripts (Scherman and Löwhagen, 2004:4) or preferably from audio recordings as current best practice in medical market research favours working from the audio as nuances of meaning are more likely to be apparent (Kazmer & Xie, 2008).

Given the complexity of influencing compliance and the desire to use this as a measure of effective learning, structured and semi-structured in depth interviews will take place. In addition physiological improvements to lung functionality need to be measured for a sample of the participants to offer an objective indicator that a change of behaviour has occurred.

Other influences on outcomes that should be revealed in a semi-structured interview include issues of identity in relation to learning (Kirkup, 2001; and Hughes, 2007) and motivation, what Resnik (2008) describes as ‘passion based learning’.

The text from these interviews will be analysed for clusters of meaning, aiming to pick out nuanced responses, potentially from video but at least from audio recording of interviews (Kazmer & Xie, 2008), which according to Webb (2011) is preferable to working from text alone

The aim would be to reveal the experiences of those interviewed and so come to a view of ‘understandings and misunderstandings’ about their condition, the role their prescribed ‘preventer’ medication plays and the value of Qstream.

Qstream offers a variety of ways to monitor and measure activity on the platform (fig. 4) . This is how data and metadata from several hundred participants would be analysed. (Appendix 3 lists the affordances of using a Qstream private site)

Fig. 4. Screengrab showing example of analytics available on a group of 356 learners.

TIME LINE CHART

Fig. 5. Simplified model of research. Punch (2006: KL 487 )

Limitations

No study of a therapeutic regime can be considered fully valid without some documentation of whether the patients took their treatment. Horn (1992:127) Establishing valid data on whether people take their medication as prescribed will be a challenge.

No single method of assessment of compliance with (anti-asthma) therapy is ideal nor does any one method give a full picture of the pattern of compliance. Usually the chosen method(s) will require to be validated specifically for the particular circumstances under investigation.

An issue arises with using an Internet and mobile alert system where potentially limited or broken Internet access or paid-for Wi-Fi impinges on the student’s access to the resources. Care will be taken both over how content is scripted and produced, as well as securing a robust platform. Kerfoot and Baker (2012:13) had problems in relation to: ‘server errors’,  ‘attrition’ (Kerfoot & Baker, 2012:4), ‘fatigue’ (Kerfoot et al., 2010) and technical hitches due to spam blockers (Shaw et al., 2011) as well as the challenging nature of the content. (In Vernon, 2013)

It is also reasonable to suggest that those who are noncompliant to regularly taking their prescribed medicine could also be ‘noncompliant’ to the features of Qstream – a twice or thrice weekly prompt to take a few minutes to answer some questions.

A UK license for up to 1,000 participants to use the Qstream platform is $15,000 per annum.

In research carried out by ZoRA et al. (1989). Only 1 in 17 diary sheets completed by asthmatic children (under age 14) were accurate to within 10% of the number of puffs used. Whilst the participants in this research are older, any completion of a dairy sheet will include errors and inaccuracies.

Overestimation in self-reporting is well known and probably due to a desire to please. (Cochrane, 1995. Cochrane 1998)

Failure of a therapeutic regime can only be ascribed to poor compliance if appropriate drugs are being prescribed in adequate dosage that historically has tended not to be the situation in the management of asthma. (Horn, 1992:127)

The population using the Internet is diverse. This impacts on research in relation to access and having a representative group of participants. (Eynon, 2009). The use of Qstream in a student population favours use of a mobile device for ease of response to email prompts. It is suggested that 53.7% of people in the UK will be using smartphones by 2014 with those aged 18-25 by far the largest group followed by teenagers (New Media Trend Watch, 2013) whilst it is estimated that nearly 38% will have tablets by this time. (eMarketer, 2013).

Ethics

For ethical reasons an institutional review board would be approached for approval to perform this study. (Kerfoot & Baker, 2012:2)  (In Vernon, 2013)

• A standardized form will be used to obtain informed consent from participants.

• Well Being, confidentiality and anonymity will be stressed.

• Rights will be clearly explained

• The personal safety of those conducting the research will be considered.

• Conflicts of Interest will be declared, for example, Dr Kerfoot is on the board of Qstream.

• Unintended consequences will be considered.

• People have to have the freedom to make mistakes in relation how they elect to adhere, or not, to the prescription drugs they are prescribed. Mental Healthcare Act.

Validity and reliability

If one hope is to correlate a physiological change with improved knowledge an array of factors need to be isolated and measured. Data from both a qualitative and a quantitative approach, the clusters of issues and ideas from analysing what is said in pre and post interviews and the activity on the Qstream platform will offer some indication of what is taking place and why.

Implications for future policies, practice and further research

1) Socio-constructed learning and connectivism

It is further hypothesized that effective compliance is most likely to be achieved where in addition to the patient, the related HCPs engage in the proposed e-learning programme. Social interaction has an important role to play in learning. (Vygotsky, 1978) Donath (2002) shows how through exchanging information a person gains recognition and that social learning of this kind provides affiliation. This suggests value in having HCPs, even family, especially parents and guardians, of younger people with asthma taking part in a Qstream learning programme and exploiting how we connect in networks (Kit Yee et al., 2011) Wang (2008:05) considers the importance in learning of both the student and instructor. HCPs would play the role of ‘intermediaries’ (Laurillard, 1993).

This not only invokes ideas of values relating to communities of practice (Lave and Wenger, 1991) but also, in our digital age, to ‘connectivism’ (Siemens, 2006; Calvani, 2009: de Waard, 2011) – where ‘nodes of readily available information’ are linked to and shared between learners. (Edudemic, 2013) The asthmatic as a learner can question their own knowledge and understanding by connecting with others, as part of a ‘community of practice’ (Lave and Wenger, 1991), from the periphery (Brown, 2002; Brown, 2007) and vicariously (Cox, 2006). Connecting with other people with asthmatics online is supported by the Asthma UK website (Asthma UK, 2013)

2) Use of narrative and creative content

Fig. 5 Screengrab introducing a series of animated videos on design. Open Learn (2013)

The quality and style of scriptwriting using the Qstream platform will impact on effectiveness. (Laurillard, 2000 and Jewell and Hooper, 2011) understand the role of narrative in learning. Resnik and Chang (2008) talk about the need for e-learning to be self-revealing, pleasurable and fun, with a ‘low threshold and high ceiling, supporting collaboration, plugins and making it iterative’ and ‘tinkerable’. The Open University, through Open Learn, often use rich video content to engage audiences, for example with a series of short video in ‘Design in a nutshell’. (Open Learn, 2013)

3) Further personalisation of e-learning

Intelligent Web pages that can adapt themselves to a person’s linguistic and other competence are examples of more ambitious applications that we might look forward to in coming decades. (Hara et al., 2006:352)

4) Extend duration of study period

This study would initially be restricted to a single term or academic year, though it could be extended, for example, to include first year undergraduates through the 3 to 4 year duration of their undergraduate studies. Ostojic et al.,  (2005) carried out a 4-month trial, whilst trials run by Kerfoot (2008-2012) have run for as long as 45 weeks.

5) Include other chronic illnesses:

Allergic rhinitis is comorbid with asthma (Bousquet at al., 2013) warranting its inclusion in future research alongside studies on asthma. Other chronic illnesses that may benefit from Qstream’s use by patients includes diabetes, epilepsy, Parkinson’s and Alzheimer’s.

6) Consider ‘Big Data’, Web 2.0, Pedagogy 2.0

There is the potential of automatic real-time data gathering relating to inhaler use with a microchip and the use of wearable technology even an ingestible smart pill (Engineer Online 2012; Arnold, 2013) in medicine. Supported by enhanced patient knowledge of their illness. Armed with this data, analysed automatically, and read by the patient or an HCP, the drug regimen and response to it is closely monitored. Such patient analytics are akin to student performance analytics (Koller, 2012) providing HCPS and educators with the potential for gathering and analysing data and metadata from hundreds of thousands of participants.

Conclusion

The opportunity exists to develop an e-learning programme that change lives – that improves the health of those with moderate to persistent asthma. Research suggests that greater knowledge and understanding of a chronic medical condition and personal medical and lifestyle responses and self-management improves compliance. However, the way the illness presents are complex, the triggers and symptoms vary greatly. The approach suggested here also offers the chance to establish if learning brings about a change in behaviour that can be measured in a physiological response – improved lung function and the role an e-learning platform can play. In due course, if a reasonable percentage of the 300+ million asthmatics who are online engage with an e-learning programme such as this significant insights and improvements to health can be made.

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APPENDIX ONE

How to define asthma

MODERATE PERSISTENT – IN THE RESEARCH GROUP (aboutasthma.com)

APPENDIX 2

University of Southampton

Of an undergraduate population at the university of Southampton of 17,000 UK asthma statistics (Asthma UK, 2013) would suggest that between 1 in 10 and 1 in 12 are asthmatic (in a school population 1 in 12 has asthma, while there are 1 in 10 in the general population). Of these 5% have severe asthma and are unlikely to be attending university. This would suggest that between 9.5% and 11.5% as asthmatic. So between 1,615 and 1,955 asthmatic, of whom 662 to 801 likely to say that they are very mild and from 436 to 528 mild so have no medication, or a reliever at most (if they’re right). Between 307 and 371 moderate and 178 to 215 severe – so likely to be on a reliever at least at one end of the spectrum and a preventer too towards the more persistent or severe levels. i.e from 485 to 586. Of these 232 to 263 are likely to think they are ‘at risk’ (Asthma UK). Horn (1992) suggests that patients who admit to poor compliance may be more amenable to compliance modifying strategies; EU funded research into asthma has shown a significant willingness of those with this troublesome disease to take part in research (Cerveri et al., 2013) Whilst use of a smartphone does not define a person as digitally literate a self-reporting interview will isolate those who are … which might be, given use of e-learning in higher education, most of this group. A further reduction is given to exclude some who will not use these devices.

Potentially conducted across four universities:

• University of Southampton. 17,000 students.
• City University, Finsbury, London. 17,000 students. Urban
• University of Cumbria in Lancaster and Newton Rigg, Penrith. 10,500 students. Rural
• University of Oxford. 20,000 students.

APPENDIX THREE

Benefits of a private site using Qstream