Being Human, Being Flawed, Being a Patient, Being Pharma

Have we gone too far with patient centricity?

Patient centricity is the most talked about concept of the past five years in pharmaceutical sales and marketing. The tectonic plates of real-world data and personalized medicine have rubbed each-other up towards an earthquake of patient centric expectations. On a daily basis we hear about cases where patients are empowered, entitled and efficient – competently and diligently using the digital landscape and social media to place themselves more centrally in decisions about their health; what happens, however, when the pendulum of patient centricity swings too far and we lose the physician as part of the collaboration?

The hubris of the patient is understandable. Healthcare organizations, consumer groups, all manner of self-ascribed experts clamor towards the privilege of practicing medicine and encourage sharing, storification and socialization of health solutions. By sharing data and experiences we certainly expedite solutions. There are phenomenal examples of how social media health projects have led to improved outcomes for patients; indeed, social channels are now a part of every stage of the diagnostic work up and medical journey.

What about the downside of the impact of social media on medicine however? Are there times where the sense-of-entitlement has fuelled egocentric decision-making? Increasingly, HCPs are challenged in an adversarial manner by patients wielding pages of printouts from the internet or have been galvanized by peers keen to scaremonger the ‘my doctor got it wrong’ story as part of attention-seeking drama. It may not be a coincidence that ‘hypochondria’ has been re-named as ‘Health Anxiety Disorder’ because it is more comforting to have a medical label to lead with than a criticism to acknowledge; the creation of the ‘Berge Facebook Addiction Scale’ has led cynics to predict the appearance of Social Media Anxiety Disorder making an appearance in the mecca of mood disorders – the DSMIV sometime very soon.

If we accept that there is commendable value in medical social media, we must also be honest that cyberchondria and digital attention deficit disorder are catalysts that may have positioned patient centricity too firmly. Patient centricity started out as needing to hear patient needs and wants and to share responsibility. Perhaps we have pushed physicians and pharmaceutical experts too far out onto the circumference. Where social media shares negative experiences or is a propaganda for ‘Fear of missing out’, there is the potential to believe that patients and HCPs are on opposing teams, rather than working together for good outcomes. It is known that we routinely tell 10 people of a bad experience whilst rarely sharing a good one; this is a missed opportunity because a recent study from the University of California San Diego (UCSD), suggests that using social media may even spread happiness. The research team, led by James Fowler of the School of Medicine at UCSD, found that happy status updates encourage other users to post happy status updates themselves. So we need to be less suspicious when we use social media as a tool with which to beat our HCPs and basically, remember to say thank you when we get the medical support we need. There are many more tales of success than there are of woe; collectively we should dampen our social media anxiety – with social media.

What is true patient centricity?

I recently carried out a review of what patient centricity means to patients and to pharma when they are looking to create a health app for patients. The smartphone revolution is the most rapid adoption of a technological advance in modern history and has impacted heavily on the way patients now ‘consume’ healthcare. Patient-consumers purchase health and fitness apps to secure long-term wellness and hold illness at arm’s length for as long as possible. This is because mHealth delivers healthcare services that overcome geographical and organizational barriers, are unrestricted by human resources and offer financial savings to overburdened health budgets.

There is a plethora of examples where mHealth apps have benefitted patient support, health promotion, adherence to treatment and achievement of medical goals. Dozens of new health apps for smartphones and tablets are produced each month, adding to the hundreds of thousands already in existence. Some are focused on consumers’ health and lifestyle, while others are intended to support the professional activities of clinicians or other healthcare workers. These are becoming routinely consistent across many disease areas and the use of apps in conjunction with social storification, gamification and collaboration is starting to change and improve outcome measures.

As such, pharma companies face competition from other innovators looking to step into health management. Pharma are advised not to develop apps as a one-off strategy, as a sales tool or a brand enhancement but as a component of customer-centric service. Pharma often forget to include the ‘fun factor’ in app functionality and must develop apps that ‘normalize’ a health condition or facilitate a patient being able to return to as near-normal a lifestyle as possible when living with a chronic condition; these are the apps that are highly valued by patients and enhance the industry’s reputation for patient-centric solutions. Pharma needs to develop flexible, customizable apps that transform with the different needs of a patient at the different stages of their adaptation to a condition. However, the ability of a pharmaceutical company to be bold when developing apps is limited because large corporations often lack the agility of the ‘fail-forward’ mentality that governs the entrepreneurial endeavour. Furthermore, health apps continue to present challenges to regulatory authorities. Software intended for use in a medical context can be classified as a medical device, and health apps therefore potentially fall within the regulatory remit of bodies such as the Medicines and Healthcare products Regulatory Agency (MHRA) in the UK and the Food and Drug Administration (FDA) in the USA. This is becoming easier as experience with apps continues and the data they generate adds to the establishment of ‘real world evidence’ and data that substantiates a treatment, approach or improvement in patient-centered care.

What can we learn from app development to improve patient centricity?

Apps have the demonstrable potential to increase the quality and efficiency of healthcare, and to empower consumers to manage their health better. However, if the app doesn’t suit the patient’s purpose it will be abandoned. Consumer patients have great choice, short attention spans and an experience-hungry approach. Physicians remain influential in recommending apps to patients, but require a more evidence-based and easily accessible source of information about useful medical apps.

We need to figure out how to engage patients and educate at a higher level and enable medical motivation by delivering happiness simply. That includes developing flexible, customizable apps that transform with the different needs of a patient at the different stages of their adaptation to a condition.

As such, it is worth making sure we take time to check if we do have the same perspective on patient centricity. Patients expect an FMCG (fast-moving consumer goods)/consumer-type approach to their medical lives despite the slowness of some parts of the pharmaceutical sector to accommodate their requirements fully. The service/entitled attitude of ‘millennials’ is not restricted to luxury items or pursuits but a general raise in expectations concerning healthcare too. Helen Harrison, Digital Director, EMEA at Lilly, explains that the patient-centric approach is slow to permeate through industry but change is underway and inevitable – “I think most companies are in the early days of thinking in this way so I don’t think it has affected how pharma is perceived externally in communications. Healthcare professionals are feeling the shift with patients being better informed and moving to more of a patient service model. We all have higher expectations of services and healthcare should be no different.”

Flourent Edouard, Vice President of Commercial Excellence at AstraZeneca, echoes these observations: “Patients are becoming more like consumers – before they were just sick: now they expect to receive certain levels of info directly from providers to help with the challenges of their own management. We [in pharma] didn’t create that change and we aren’t leading it – patients are – we just try to follow them and create the good experience that they deserve.”

Christine Jordens, Business Support Director at Boehringer Ingelheim, believes that patients and pharma approach patient centricity from different directions: “People expect to be healthy, they have goals to be healthy and wish to have health questions answered quickly and health problems solved swiftly. Apps are a part of that ‘immediacy’ that patients hold as important above all else – because they want to be happy, not burdened by illness. We [in industry] often develop apps with a clinical expectation then discover that they don’t enable us to preserve motivation with patients – because at the end of the day people want to be happy as a priority and less bothered by their condition. We need to figure out how to engage patients and educate at a higher level and enable medical motivation by delivering happiness simply. That includes developing flexible, customizable apps that transform with the different needs of a patient at the different stages of their adaptation to a condition. For example, coaching is appropriate at diagnosis, reminders work when therapy commences and rewards become more important to keep spirits high. Mobile apps need to be flexible to the patient’s lifestyle and their lifecycle of adapting to having a condition to managing it in the longer term. From the outset we need to recognize that we come at things differently – pharma says ‘can we develop an app to improve drug adherence, compliance, ensure product safety and efficacy, what data can we get, check, use? But the patient wants to have an app that makes their life easier and enjoyable. Even the terminology we use shows we think clinically as commercial drug developers rather than behaviourally to help people live better despite illness. Patients are using different lifestyle apps as needed for routinely living their lives – then they add things on if ill health prevails – so happy first, therapy second. Pharma needs to create apps in that priority too, but we do it the opposite way around.”

The principles of simplicity and happiness seem to underpin the strive for patient centricity – whether that is being more positive through social media or creating apps that help with the everyday toil of living with a chronic condition. These are insightful for a pharma company when they decide to declare they are seeking to be ‘patient centric’. Should we be patient-centric at all; is patient-inclusive a safer proposition? Yes I can research my symptoms, corroborate them with my peers and make a more informed decision about a treatment path. I’m a Medical Biochemist with 20 years experience as a medical writer and a decade’s-worth of evangelism about social media and other digital solutions for medicine. But these are just tools – and sometimes very blunt instruments – they cannot replace the empathy and knowledge of a medical practitioner or indeed a pharmaceutical company’s coterie of experts who have dedicated vast resources to drug development and unearthing disease pathologies. We need to be inclusive but we need to be percipient – digital does not replace the doctor, it helps them connect with their patients. The era of socialized and digital health may make us all able to share our experiences but let’s not stop hearing from the experts as a consequence.

Emma D'Arcy has been a leader, lobbyist and innovator in healthcare and proponent of the value insights gained from socialized health ad patient centricity for 20 years. A medical biochemist who is completing phd research about the impact of social media on medicine, Emma helps the pharma industry upskill and adapt to the era of participatory medicine where everyone is a consumer and a contributor. When is isn't writing articles, chairing events or educating industry, Emma is writing poetry - or failing to parent 2 children, a large dog and an irascible cat.

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