One size drug does not fit all: genetics and non-adherence

Adherence to treatment balances on patients’ beliefs about the necessity for medication and their concerns about taking it (Necessity-Concerns Framework, NCF™). To support patients effectively there is a need to personalise. Each person’s experience of a medicine is particular to them and this experience is a key part of how they view that medicine. As the technical aspects of medicines continue to develop, this experience does not need to be left entirely to a ‘suck it and see’ approach. Let us take an example from genetics.

Variability in patients’ genetic characteristics can affect how patients respond to treatment. This variability can come in terms of enhancing their tolerance or resistance to a medicine, or altering their susceptibility to side effects. Genetic variation can, therefore, change behaviour towards medication especially when a patient’s perceived necessity and concerns deviate from the expected when they are given a standard dose. This jeopardises the patient’s motivation to take the medication as prescribed.

Control trials may not account for genetic differences in their participants’ selection process, usually recommending a one-size-fit-all type of dose [1]. Prescribing the same dose to all patients puts these patients at risk of non-adherence. If the patient experiences more side effects than somebody else on the same dose (concerns), or if the dose does not work (necessity). These change the perceptions a patient originally has about a medication.

For example:

CYP2C9 is an enzyme that metabolises warfarin to clear it from the body; since people with genetic polymorphisms of CYP2C9 are at double the risk of bleeding [2], this subgroup of patients, as they experience bleeding, will have increased concerns about their medication.

Genetic variability modifies the neurotransmission pathways, which affect the perception and sensitivity to pain (e.g. for migraine and cancer patients) [3]. This reminds us that treatment responses to analgesics will be patient-dependent and patients will need different amounts of medication for a given pain, potentially increasing side effects, lowering perceived efficacy and, in turn, the patient’s concerns towards their medication. In these cases, precision prescribing, by tailoring the dosage to a specific patient, may result in better adherence.

Pharmacogenetic testing may support medication adherence by increasing the patients’ understanding and confidence about their treatment. Studies have suggested that knowing you are being tested reduces anxiety about the treatments’ consequences, while discussing genetics with patients can increase patient-clinician communications and create a sense of control for patients who then share decisions with their doctor [4], positively contributing to adherence.

Currently, studies associating pharmacogenetics with health outcomes are scarce. Adherence programmes for therapy areas where it has been demonstrated genetic differences matter need to include tailoring the interventions to effectively support patients with these genetic polymorphisms.

[1] Frueh FW. Back to the future: why randomized controlled trials cannot be the answer to pharmacogenomics and personalized medicine. Pharmacogenomics. 2009;10:1077-1081. [2] Sanderson S, Emery J, Higgins J. 2005. CYP2C9 gene variants, drug dose, and bleeding risk in warfarin-treated patients: A HuGEnet™ systematic review and meta-analysis. Genet Med. 2005;7:97-104. [3] Zorina-Lichtenwalter K,

Meloto C.B., Khoury S., Diatchenko L. Genetic predictors of human chronic pain conditions. Neuroscience. 2016; 338:36-62. [4] Haga SB, La Pointe NMA. The potential impact of pharmacogenetic testing on medication adherence. Pharmacogenomics J. 2013;13:481–483.

Understanding treatment-related behaviour

The extended common-sense model of self-regulation (eCSM) provides a framework by which we can work to gain valuable insights from patients to understand how their illness perceptions and beliefs about medicines impact their treatment-related behaviours. These can be addressed by using behavioural science principles to effectively improve adherence and optimise patient outcomes.

The common-sense model of self-regulation (CSM) is a dynamic framework which seeks to explain the processes by which beliefs about illness impact on behaviour. The CSM proposes that in response to a health threat, such as a medical diagnosis, people construct cognitive representations of their illness (illness perceptions) based on internal cues, such as symptoms, and external cues, such as information from a clinician. The CSM proposes that behaviours to cope with an illness are driven by illness perceptions. The coping behaviour is then evaluated and adapted based on its apparent success.

Studies applying the CSM in a range of health-related behaviours provided empirical evidence to support the role of illness perceptions as predictors of health-related behaviour, however, there is less support for the application of the CSM to treatment-specific behaviours. Studies applying the CSM to adherence to prescribed medication in chronic conditions found only weak associations between illness perceptions and adherence behaviour. This suggests illness perceptions alone are not the best, or only, predictors of treatment-related behaviour.

The ability of the CSM to explain treatment-related behaviour may be increased by taking patients’ beliefs about treatment into account. For example, decisions to initiate, persist and adhere to medication are better explained by both illness perceptions and beliefs about medications.

Beliefs about medications can be grouped into beliefs about medicines in general (such as the belief that doctors over-prescribe medications or that medicines can be harmful) and beliefs about specific, prescribed medications (beliefs about the necessity for treatment and concerns about the potential adverse effects of a medicine). People with negative beliefs about medicines in general are less likely to adhere to medication. Patients with doubts about the necessity for treatment, or strong concerns about adverse effects, are more likely to decline treatment or be non-adherent.

The eCSM includes specific and general beliefs about treatment to increase the ability of the CSM to explain treatment-related behaviours. According to the eCSM, adherence will depend on whether a person perceives their illness warrants treatment, based on their illness perceptions, and whether they believe they have been prescribed appropriate treatment, based on their general and specific beliefs about the treatment. Uptake, adherence and persistence to medication is likely to be influenced by patients’ beliefs about treatment, as well as their illness perceptions. We must therefore use behavioural science to target both illness perceptions and beliefs about treatment to optimise patient outcomes.

What does pain mean to the patient?

Pain is a person’s private and unique experience, and no one except that person can know what their pain feels like.

There is a real dynamic relationship between the emotional and physical conditions of an individual and their experience of pain.

Long term pain puts stress on the brain which is revealed cognitive issues such as low mood, difficulty with memory or concentration, no matter what the underlying condition causing pain is.

Chronic pain and its psychological effects reduce quality of life, not only for the person with pain but for their family as well. In some cases, the psychological effects of pain outlives the pain itself and become the major health disorder. For instance, under-managed chronic pain may lead to less sleep, exhaustion, more stress, relationship and work problems and psychological distress so it is important to be able to intervene in this cycle to improve pain management and psychological welfare.

Pain can prevent people engaging with care that would improve their outcomes, and for each person the support they need is as unique as their experience of their pain.

Personalisation is essential when creating effective support programs for the patients.

Getting the most out of research – using co-design to capture the voices of stakeholders

Earlier this year Spoonful of Sugar in partnership with UCL entered the JoVE ‘Film Your Research competition’. This international competition invited scientists to connect with the concept of “visual science” by making a 2-minute video featuring members of the research team performing a scientific technique in the field. The SoS entry described the process of co-design using a fun example to highlight why co-design is important for all aspects of research and to improve adherence with treatment.

Co-design in research describes a process that involves designing a solution to a research problem with the end users. It helps to ensure that any research undertaken is relevant, applicable, and appropriate for the people affected by the research. Co-design can include any other stakeholders who may be influenced by the research. The first step in co-design is to identify the stakeholders, this may involve thinking ‘outside the square’ to identify the people who may have a less direct relationship with the research. Secondly, participants need to be identified and this can be done through various social and communication networks. Lastly, feedback and views about the research are gathered by using appropriately designed questions, which are then incorporated into the research.

This research technique aims to address the problem in science where solutions are developed for users without user input, resulting in solutions that don’t work or are not used. Co-design ensures that user views are listened to throughout the entire research process and avoids assumptions that isolates research from the users.

The competition received 100’s of entries from over 30 countries and SoS were among the top 15 critically-acclaimed videos from @JoVEJournal Film your research contest. Check it out!

How can behavioural science get the most out of design?

Behavioural science depends on communication at two levels. First, between the specialist scientific disciplines it comprises, ranging from psychology and cognitive science to psychobiology and ethology. Second, between its research outputs and its disparate non-specialist target audiences.

The word communication originates from the Latin communicare, which meant to share, divide out, inform, unite and participate in. Desirable and laudable though they sound, these goals aren’t easy to achieve when it comes to crossing academic disciplines, cultural backgrounds, age barriers and so on; as any behavioural scientist will tell you.

Science specialists often are not communication specialists, especially when it comes to the complex process of synthesising visual with verbal information – which happens not only through static, two dimensional media, but equally through film, animation, interactive technology, physical objects, built environments and beyond.

Designers have this specialist expertise. Their practical training, cultural experience, insight, and constant engagement with new forms of technology equips them with the precise tools needed to create tailored, effective communication to successfully reach intended audiences.

Even the best designers don’t always get it right. Why? In part, because accommodating everyones’ very different aspirations is extremely difficult to achieve. On a practical level it often boils down to the way the discipline of design has – in recent decades – slipped into conforming to a post-event model, where designers are employed at the end stage of a creative process. At this point the value they can add is restricted. The result is a generation of designers who’ve become fixated and dependent on solving ‘problems’ that are framed by a commissioner, without sufficiently contributing to the bigger design question about the framing itself.

Times are changing though. Both designers (like ourselves) and design commissioners (like Spoonful of Sugar) are recognising that design is more than just a discipline, it’s ‘a meta-discipline: a source of integration for all other fields of practice’. Design in fact plays an integral part in stimulating and driving the kind of trans-disciplinary thinking and doing needed to tackle the huge communication challenges facing behavioural science (and other sciences) today.

Even the most robust multidisciplinary partnerships can pose challenges, but by shifting the design process from a two way designer / commissioner relationship to a co-design, participatory process involving all stakeholders (e.g. employees, partners, citizens, patients, end users), we can change the focus from a product and commissioner-centric view to personalised user-experiences. Through that, we can demonstrate how a successful multidisciplinary team can incorporate development of ideas from all sides in order to get the results they hope for from their target audiences.

Using persuasion science in practice

Understanding the perceptions and motivations of people in the workplace can be applied to many aspects of management, at the individual, team and organisational level. Collecting, analysing and interpreting behavioural insights allows us to consider different viewpoints and potential barriers to successful change. Therefore, the use of psychological models can arm us with additional evidence-based management strategies.

A recent scan of the literature conducted by Spoonful of Sugar has shown multiple gaps in the synthesis, scrutiny and reporting of management science and management psychology. We aimed to investigate the evidence for and benefits of applying psychology-based theories in a broad range of management disciplines including human resources, gratuity, and employee performance. Despite the essential role of management in day-to-day business, there were few reports evidencing practice in relation to psychology-based or theoretical models, which proved it difficult to draw conclusions. The lack of case-studies or analyses were supplemented by opinion articles, which can provide a false-impression of what defines and ensures good practice. This contributes to a second problem: we are unable to truly evaluate hypotheses in management and organisation science without sound evidence, so best practice remains unclear. For example, in managerial psychology, the relevance and utility of Herzberg’s two-factor theory (1959) is still debated, despite widespread application. This theory suggests that job satisfaction and dissatisfaction are influenced by independent and separate factors. Much criticism about its original methodology and limited context remain1,2,3. The power of academia and research in management can address these issues and provide clarity on best practice.

The absence of high quality research in management psychology and science can be detrimental to the educational, academic and practical applications. We need higher quality and more evidence to evaluate hypotheses and to truly understand how we can objectively measure and enhance the way we manage people, processes and organisations. Given the robust scientific methods we can now access and the technological advances in data collection, surveying and analysis, we are well-placed to understand the impact of science and psychology on management.

What’s your experience of using behavioural science in management? Now is your chance to contribute to the knowledge and science behind management –being able to capture people’s voices and experiences can help advance this field. Spoonful of Sugar are calling for research papers and case studies as part of the conference track ‘Using Persuasion Science in Practice’ at EURAM 2018, deadline 10 January 2018. Please contact amy@sos-adherence.co.uk or karen@sos-adherence.co.uk for more information.

1 Herzberg, Frederick; Mausner, Bernard; Snyderman, Barbara B. (1959). The Motivation to Work (2nd ed.). New York: John Wiley.

2 Bassett‐Jones, N. and Lloyd, G. C. (2005) Does Herzberg’s motivation theory have staying power? Journal of Management Development, Vol. 24 Issue: 10, pp.929-943

3 Malik, M. E., and Naeem B. (2013) Towards Understanding Controversy on Herzberg Theory of Motivation. World Applied Sciences Journal 24 (8): 1031-1036, 2013

When instability breeds inability: Applying adherence tools with an unpredictable client group.

Adherence tools are often employed to improve our understanding of the practical and perceptual barriers which stand between patients and their medication regimes. Substance misusers are a notoriously difficult-to-treat client group. There is continued debate around whether drug addiction can be classified as an illness. For the purpose of this blog, let’s assume addiction to be an illness. Could applying a Perceptions and Practicalities Approach (PAPA™) help to improve our understanding of why adherence to prescribed heroin substitutes breaks down among this client group?

PAPA™ provides a conceptual framework that explains non-adherence based on the overlapping categories of intentional and un-intentional non-adherence. Unintentional non-adherence can result from barriers, beyond the control of the individual, inhibiting the individual’s ability to adhere. Practical barriers could include, but are not limited to, homelessness, unemployment, and thus a lack of/ no financial stability. Intentional non-adherence relates to perceptions which shape an individual’s motivation to adhere. Motivation among this client group generally fluctuates, and other self-perceptions tend to exacerbate this issue. A lack of self-efficacy in one’s own ability to maintain abstinence, a lack of self-worth, and the self-disabling belief that one is undeserving of a better quality of life, are all potential perceptual barriers faced by this client group.

Considering the resources necessary to achieve and maintain recovery; many individuals released into the community have little ‘recovery capital’ to draw upon. They transition from behind bars, back into a life of chaos and instability. This is where adherence breaks down. It could be argued that the individuals’ ability, or inability, to adhere is the crux of the problem. Efforts to rehabilitate substance misusing offenders typically focus on perceptual factors including motivation, but seldom attempt to address the practical barriers that stand between individuals’ and adherence.

Implementing aspects of PAPA™ into interventions for this client group, to ensure a focus on motivation and ability, could lead to more sustainable outcomes. If instability breeds inability then, without tackling the perceptual and practical barriers among this client group, could any rehabilitative effort be truly successful?

Smart Science – using design principles to inform scientific posters

When it comes to communicating science, there’s a lot to think about. Design is an important and often overlooked aspect —many researchers focus most of their efforts on content.

But design deserves at least equal, if not more, attention. Fortunately for scientists, design is a science and can be learned. Get more scientific with your design — it’ll help you get a message across.

Posters are a popular way to showcase new research to the scientific community. The use of intelligent design principals is vital to maximise the impact of your poster. Here’s some advice for making better posters.

Text and tables

This is where most of what you want to say will be displayed, the right design and layout here is vital.

  • A large block of text is not inviting to anyone
  • Each section of text should be clear and concise, focusing on a single area.
  • Five to six lines of text with 25-30 characters per line is generally best. Use bullet points to break up sections and highlight important points.
  • A large font (minimum 24-point size) is important so that the text can be read from at least one metre away.
  • Poster text should be organised in columns — this helps your eyes move less as you read.
  • There should be a good balance of text, diagrams, tables and graphics. Avoid large blank areas.
  • Tables and figures with colours are more engaging and exciting to look at and are often a clear and easy way to show complex information. (But be careful with what colours you use.)
  • Black text on a white background is often the easiest to read.

Colour is important and should be considered carefully. Opposite colours tend to make a bold — if potentially clashing — statement and are therefore more likely to catch the eye of a passing delegate. But use your best judgement on making something look good first and striking second. Studies of Event Related Potentials (a measure of neural activity related to cognitive and sensory processes) have shown that higher attention is paid to yellow- and green-based colours.

Light at a conference is important to consider. Although glossy laminate may look better, opting for a matt lamination ensures everyone will be able to see it regardless of how much light you have. Many conferences or universities have set guidelines as to the layout and size of posters. This is always an important thing to consider: a rectangle in a sea of square posters stands out for the wrong reasons.

What happens when you’ve grabbed someone’s attention? In terms of information content, a study comparing the effectiveness of different methods of health education found that found that more specific topics were preferred over broad coverage, suggesting that it is better to pick a small area of research to focus on rather than attempting to cover an expansive topic.

Surveys have shown one to one discussions are more valuable, with 55.4% of conference delegates preferring individual discussions with authors about the posters rather than moderated presentations. This is the most important chance to discuss your research as it gives you the opportunity to discuss things that have not been included in the main body of the poster and gives you opportunities to answer questions.

Posters may not currently be the most valued way of showcasing results, but with the help of intelligent design, posters can be revolutionised! Posters are and will remain a vital part of scientific conferences. So next time you have a poster to design, consider the use of science to guide you.

Is disruptive health technology misbehaving?

Artificial intelligence, robotics, and nano-devices, among other rapidly expanding technologies have an overwhelming potential to shape many aspects of our not too distance future, not least our medical care.

With somewhat ease, we can now visualize a future with automated referrals, prescribing, monitoring and discharge – streamlining and synchronizing the care we receive.

However, it will be critical that such advances do not undermine what behavioural science and psychology have cemented over the last half century: that, contrary to standard economic theories, humans are not always rational. How we make decisions, such as whether to take a medicine, are complex and multi-factorial.

Consultations can often be key to ensure the optimal decision is reached. However, with automated services such as robotic drug dispensing, such human-human interactions will be lost.

Devices do not always have to be ‘unhuman’ though; many have been designed to be behaviourally smart. Such devices consider the irrational facets and individual complexities in human behaviour to improve outcomes and help people make better decisions for healthier, happier lives.

With the expanding accessibility of big data there is also a new opportunity to take advantage of, as quantitative behavioural insights and analysis can facilitate increasingly tailored and personalized support through medical devices.

Incorporating an understanding of human behaviour into artificial intelligence and other innovative medical devices will be vital in future healthcare, but done correctly could offer great potential to improve health outcomes.

Pharmacy – it’s an open-door policy for patients

Pharmacists and medicines go hand in hand, so it’s no surprise that assisting patients with medicines is what pharm-assist are best at.

The thing with medicines is that despite how good they are, they work most effectively only when they are taken as prescribed. The act of ‘not taking medication as prescribed’ is known as non-adherence, a straight forward term for behaviour that emanates from a complex set of beliefs. The resulting behaviours are not conducive to optimising outcomes for patients’ health.

There are many perceptual and practical factors that influence the patient’s motivation and ability to adhere to agreed treatments(1), and it’s estimated that non-adherence is somewhere between 30-50%(2). This in turn results in poor health outcomes for the patient, but also it becomes costly for the NHS in terms of the medicines wasted (an estimated £110 million worth of medicines are returned to pharmacies annually)(3) and the burden this creates for the healthcare system to keep on offering alternatives.

Non-adherence is not just a problem for developed countries, but places a burden on medicines outcomes globally; there are the same perceptual and practical concerns for developing countries(4,5). Regardless of location, once patients gain access to medicines trade-off between necessity (needing the medicines) versus the concerns (e.g. about potential long-term side-effects) come into play. This underpins a common need for healthcare systems, of all sizes and resource levels, to adopt ways to improve adherence.

What’s the solution?

The good news is, there are many ways to help patients remain adherent to their medicines and the role for pharmacists in supporting patients can be pivotal. There is an increasing call for medicines information to be embedded in the community and not just confined to a clinician’s room. Pharmacies can provide an ideal environment for patients to have an informal conversation about their medicines without the time pressures that are often associated with appointments with clinicians.

There is huge choice and flexibility for patients, with over 11,500 pharmacies in England(6) hence the potential impact of channelling adherence programmes through pharmacies can make a real difference to non-adherence rates. Internationally, organisation such as the Commonwealth Pharmacy Association are also working to increase access to pharmacy expertise in resource-scarce settings. Moreover, what’s needed by pharmacists to support behaviour changes are not complex or expensive.

Pharmacists can hold more than just the keys to the medicines cabinet, they are experts in medicines and their vital role in the community allows them to advise and support patients in making the most of their medicines.
 
 
 
1. Clifford S, Barber N, Horne R. Understanding different beliefs held by adherers, unintentional nonadherers, and intentional nonadherers: application of the Necessity-Concerns Framework. J Psychosom Res. 2008 Jan;64(1):41–6.

2. NICE Clinical Guidance 76: Medicines adherence: involving patients in decisions about prescribed medicines and supporting-adherence; 2009 Jan.

3. Pharmaceutical waste reduction in the NHS: A best practice compilation paper; 2015 June

4. Oqua D, Agu KA, Isah MA, Onoh OU, Iyaji PG, Wutoh AK, et al. Improving pharmacy practice through public health programs: experience from Global HIV/AIDS initiative Nigeria project. SpringerPlus. 2013;2:525.

5. Khanam MA, Lindeboom W, Koehlmoos TLP, Alam DS, Niessen L, Milton AH. Hypertension: adherence to treatment in rural Bangladesh–findings from a population-based study. Glob Health Action. 2014;7:25028.

6. General Pharmaceutical Services in England: 2006/07 to 2015/16; 2016 November