“Was it something I said?” Why psychological research needs qualitative data

 

Psychology: the science of human behaviour. The hallmarks of sound Science are rigour, objectivity, and systematic study. A science is only as objective as the subject matter it studies. Then comes the contradiction: humans are complex and unpredictable. We are not objective subject matter, we are the antithesis; subjective.

I am not a number! I am a free man!

Perhaps we should stop attempting to objectify the subjective and, instead, embrace what makes this science unique from all others. We can embrace this subjectivity by applying qualitative analyses to the study of humans. That is not to suggest abandonment of quantitative analyses. Even a subjective science needs numbers. But we have more substance than numbers suggest, and the reductionism inherent in quantitative data, when humans are the focal point of the study, leads to an unfortunate waste of rich, insightful data. This gold dust serves to enlighten; explaining and illuminating the numbers. It compliments the numbers we produce through quantitative psychological research.

Why does psychological research need qualitative data?
Qualitative data is concerned with the how and why; it taps into the psychological processes that individuals engage in. Qualitative methodologies provide insight into how things occur, how we make sense of our surroundings and how we arrive at the decisions we ultimately make. In contrast to much quantitative research, qualitative designs allow researchers to investigate issues within a real-world context, rather than the controlled environment created by quantitative surveys which aim to yield only numbers. A paper critically appraising the use of qualitative research wrote that, “qualitative research aims to generate in-depth accounts from individuals and groups by talking with them, watching their behaviour, analysing their artefacts and taking into account the different contexts in which they are based.”1

“It’s ability to refine or criticise existing theories and provide us with rich descriptions to enhance our understanding of a certain process or phenomenon makes qualitative research increasingly important in healthcare today” – Dr Lorelei Lingard, Professor in the Department of Medicine at the University of Western Ontario.2

Healthcare research has found itself to be driven by the paradigm of quantitative research. This indicates missed opportunities to investigate the richer descriptions of phenomena which would allow us greater insight into human processes. A prime example of where qualitative research proves its greater utility is the pertinent issue of patients’ non-adherence to medications. Prevalence rates of non-adherence, yielded through quantitative designs, is undeniably essential to our understanding of the gravity of the issue. However, tapping into the thought processes underpinning the issue is essential. We cannot begin to transform non-adherence and create interventions to target this issue if we do not first obtain insights into the processes operating at its core. We do not dispute the continued use of quantitative research methods, but instead advocate the integration of qualitative methods into current designs; creating hybrid research designs that yield the best of both.

 

References

1. Kuper, A., Lingard, L., & Levinson, W. (2008). Critically appraising qualitative research. Bmj, 337
2. The importance of qualitative research in healthcare https://www.singhealth.com.sg/TomorrowsMed/Article/Pages/TheImportanceofQualitativeResearchinHealthcare.aspx

Beyond Nudge

Thaler’s pop science hit book Nudge1 has certainly created a stir; bringing behavioural science to the centre stage in the policymaking, private, and public arenas. The knock-on effect has been a growing excitement about the behavioural science buzz and the society-wide innovations such a ‘liberal paternalistic’ approach can offer.

In our day to day lives we make countless decisions. Many without paying much thought; and many despite often knowing they are not in our overall best long-term interests. In this sense, we are not making decisions to optimise our health and happiness in the way a completely rational being should. The concept of a ‘nudge’ acknowledges this and builds factors into our environment that makes it easier for us to make decisions that are better aligned with our long-term interests.

A good example of this is ‘opt-in’ automatic enrolment forms. Decisions, such as setting up a pension can seem cognitively draining, confusing and involve complex decisions about options we do not fully understand. Without a highly urgent motivation, the lack of ease is a barrier to action. However, automatic enrolment makes it cognitively and physically easier to make a decision for the best outcome – and increases saving.

However, much of our understanding of nudges comes from studies using simple laboratory-based tasks and we must always be cautious when extrapolating these to more complex real life situations; not all behaviours have been subject to simple effective modification by nudges alone. For example, it would be ludicrous to expect a nudge technique to persuade a patient with a peanut allergy to consume a pack of nuts. Medicines taking behaviours are another prime example of this. Many approaches to increase adherence in recent years have focused on removing practical barriers to medicines taking and providing simple nudges to make it easier to adhere. These engineer an environment for the patient whereby taking the medicine becomes easier – it involves less physical and cognitive strain. An example of this could be a pill reminder, informing the patient when to take their medicine. However, recent reports have suggested such approaches may have limited impact and do not increase adherence in all cases.2

Decisions patients make about medicines taking, like all decisions come down to two reasons – they can’t and don’t want to. Can’t: the action is not easy to make and don’t want to: their beliefs are leading them to choose not to. (Referring back to the patient with a peanut allergy, they may be perfectly capable of assembling and eating a peanut butter and jam sandwich, but regardless, do not want to.) This is outlined in the Perceptions and Practicalities Approach3 (PAPA™), which informs the NICE guidelines on adherence.4 This explains decisions as an interplay between intentional and non-intentional factors. Nudges typically remove practical barriers and making the optimal decision ‘easier’, when motivation to overcome practical barriers would otherwise not be sufficiently high. This is demonstrated in Figure 1a.

However, in cases where the non-adherence is intentional, there is motivation driving against adherence due to patients’ perceptions. Nudges will not address these perceptual factors and thus are less likely to be effective. The motivational drivers of the patients’ intention against adherence must also be addressed. (See Figure 1c.)

So how can we address the motivational drivers of intentional non-adherence? Studies analysing the patients’ perceptions of their disease and treatment are highly informative here. Patient perceptions, including those that they may not be extrinsically aware of, are accurate at predicting medicines taking behaviours. These perceptions can be understood as a trade-off between necessity beliefs and concerns. This has been shown, through a meta-analysis of over 25,000 patients covering 24 conditions in 18 countries, to be the most significant predictor of adherence.5

Patients can be individually mapped according to their level of necessity beliefs and concerns, as shown in Figure 2. Patients who have high concerns, but low necessity beliefs are sceptical, so have motivation not to adhere, whereas those with high necessity beliefs and lower concerns are accepting of their medicine. These patients have a greater positive motivation and are more likely to adhere.6 Increasing motivation for adherence requires either increasing patients’ necessity beliefs, or decreasing their concerns. That is, shifting patients towards the bottom right quadrant of the map.

An optimal approach to increase adherence must address the underlying perceptions that underpin a patients’ motivations and intentions to adhere, as well as making it easy to do. Therefore, in order for a nudge to be effective, perceptual barriers that relate to intentional must first be addressed.

Figure 1. Impact of nudges on adherence. (a) When patients have low motivation to adhere and not adhere, adherence may be low if not made easy to achieve. A nudge can increase adherence by making it easier. (b) When patients have high necessity beliefs they are more likely to be adherent, so the impact of a nudge on increasing adherence may be small. (c) Patients have greater concerns than necessity beliefs and are likely to be non-adherent. Nudges that make adherence seem cognitively and practically easier are unlikely to be effective if the concerns are not addressed.

Figure 2. Necessity beliefs and concerns perceptual map. Patients with greater necessity and lower concerns are most likely to be adherent.

References

1. Thaler RH, Sunstein CR. Nudge: Improving Decisions about Health, Wealth, and Happiness. Yale University Press; 2008.

2. Slomski A. Pill Reminders Don’t Improve Adherence. JAMA. 2017;317(24):2476. doi:10.1001/jama.2017.7588

3. Chapman SCE, Horne R, Eade R, Balestrini S, Rush J, Sisodiya SM. Applying a perceptions and practicalities approach to understanding nonadherence to antiepileptic drugs. Epilepsia. 2015;56(9):1398-1407. doi:10.1111/epi.13097

4. Medicines adherence: involving patients in decisions about prescribed medicines and supporting adherence | Guidance and guidelines | NICE. https://www.nice.org.uk/guidance/cg76. Accessed June 27, 2017.

5. Horne R, Chapman SCE, Parham R, Freemantle N, Forbes A, Cooper V. Understanding Patients’ Adherence-Related Beliefs about Medicines Prescribed for Long-Term Conditions: A Meta-Analytic Review of the Necessity-Concerns Framework. PLOS ONE. 2013;8(12):e80633. doi:10.1371/journal.pone.0080633

6. Mann DM, Ponieman D, Leventhal H, Halm EA. Predictors of adherence to diabetes medications: the role of disease and medication beliefs. J Behav Med. 2009;32(3):278-284. doi:10.1007/s10865-009-9202-y

Patient perceptions are key to ensure optimal treatment outcomes in rare disease

Over recent years there has been a flurry of oral medicines developed for diseases for which previous there were only intravenous treatments. Several rare disease have been the beneficiaries of these innovations.

Doctors have long had a ‘blind spot’ for non-adherence in their own patients, especially as it is the perception of the patients regarding their medicines that is the most important factor in determining adherence. It is not in anyone’s interest if these innovations fail to achieve their potential efficacy due to poor adherence and poor persistence. Especially as these populations of patients with rare diseases do not often have much choice regarding their medication.

So what perceptions might really matter in this situation. Patients have a perception that infused medicine are more potent. Feedback of sensations related to a treatment have a direct impact on patients’ perceptions of the efficacy of a medication. This perceived efficacy is a strong predictor of adherence and satisfaction with the perceived efficacy of a treatment directly contributes to long-term continuation of that medicine (persistence).

For rare diseases, these medications are often extremely expensive. Leaving these perceptions to chance does no-one any good, and worse, risks an inappropriate payer and prescriber view that the medication does not work, due to a hidden adherence problem.

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