Patient-Centred Care; The Past, The Present, The Future

A manifesto to make patient engagement as simple as ABC

In a few days, the best of the industry will assemble to share case studies about patient centricity at eyeforpharma Barcelona. It is invigorating that this event has become the gold-standard for exchange. In true, 'Patient Polemic' fashion, therefore, I'd like to keep pushing my industry colleagues; because beyond the ‘buzzwords’ of patient centricity, healthcare companies must be relentless in their determination to keep breaking boundaries and create systems that build trust in pharma and encourage relationships between patients and pharma. We have moved on from establishing the importance of patient focus and can now share successes and failures to offer practical solutions. Patient centricity is not about ‘faux-passion’ or ‘synthetic altruism’ for patients but is an inevitability of patient-defined research and real-world answers. We have shifted the debate from 'possible' to 'deliverable' in keeping with the healthcare shift from volume to value.

What do patients want?

Despite our best research and clinical efforts, pharmacotherapies are not always as effective as we hope they could be; this is especially so when drugs transfer from the lab, through the rigor of a clinical trial program and out into that more hazy ‘real world’ use by people who are not a homogenous trial population but real people with real lives with everyday challenges, errors, and triumphs. At the same time, technical advances have raised public expectation about the clinical potential for personalized medicine. We have seen a technical revolution – a digital paradigm shift in how we practice medicine. These advances have been accompanied by an attitudinal shift where patients have used the digital space and various tools, trackers and social media platforms to better inform and share their health stories. The current health ecosystem asks patients to be more responsible yet sources of data and counsel are inaccessible or incomprehensible to non-scientists. Despite, and sometimes because of, the plethora of communication channels available, the patient voice can go unnoticed in between multiple sources of news, breakthroughs and releases about clinical data. The collaborations of the future must include ‘life solutions’ as standard and the dialogue must be in patient language. Patient-centred care is consumer-driven.

What do healthcare companies promise?

Such ‘consumerization’ of medicine is now quotidian to patients. The relationship between people and their peers, their doctor, the drug companies who develop pharmacotherapies is more connected and closer than we could have ever predicted.  And let’s remember that patients and HCPs don’t just glean information from traditional healthcare companies – in a digitally ubiquitous world there is unlimited access to information, claims and further promises about the future of medicine and health products and services with companies who are already part of a person’s daily life. It is predicted that every person will have 7 connected devices generating healthcare data by 2020. Perhaps the most dangerous assertion that a healthcare company can make, therefore, is that improving patient centricity is simple and easy to achieve when ‘customer centricity’ has been firmly in place with other sectors for so long. How do we ‘catch-up’ with the loyalty a person already has towards non-pharma companies? Firstly, let’s be aware that the average reading age across Europe is 11 years. Compound that with challenge of communicating complex medical data and add the increasing likelihood that pharmacogenomics and personalized treatments will emerge as the treatment modes of the future. Finally, we must be realistic that patients have different measures of the success of a treatment compared with doctors or researchers; they want 24/7 access to care, to be able to live as normal a life as possible and to be able to have their voices and needs heard early, regularly and authentically. These are emotional and everyday living needs which can be difficult for pharmaceutical companies to incorporate into scientific working practices that have been in place for hundreds of years and a highly regulated landscape that sensibly does not over-promise clinical utility of investigational products.

Enhancing engagement with patients as people-first is key

Good engagement with patients is achieved when we actively provide channels to understand their needs and frustrations as they embark on a journey from good health to ill-health – and create a declarative agenda of integrative research beyond the pill. Worldwide, there is growing collaboration with patients in the research process as companies recognize that patients have experience that provides insights on the way people react to illness and how this affects treatment choices. Open innovation with a patient focus in drug discovery is an evolving paradigm of patient engagement. 'Lead patients', namely those patients who are proactive with respect to their health, possess knowledge of their disease and resulting symptoms. They are also well informed about the conventional as well as non-conventional treatments for disease management; and so can provide a nuanced perspective to drug design. Understanding how patients view the management of their diseases and how they view the use of conventional versus non-conventional interventions is imperative to researchers. Indeed, this can provide insight into how conventional treatments might be designed from the outset to encourage compliance and positive health outcomes.

Improving engagement offers improved outcomes in medicine

The value of increased early engagement and advocacy is congruent to the business needs of a company and mindful of the cost burden of chronic disease. Attrition in drug development remains high, for example, with only approximately 16% of the compounds making it through, and toxicity as the leading cause for cessation of development at all stages in the drug development pipeline. It is estimated that a 10% improvement in predicting failure before the initiation of expensive and time-consuming clinical trials could save upwards of $100 million in the costs associated with drug development. Incorporating the concept of signaling for predictive toxicology and pharmacology, personalization and patient adherence opportunities early on in an R&D program can only be cost effective with upstream impact on reimbursement and access. The patient-centred model proposes an infrastructure to identify unmet needs and amplify the voice of the patient. From this, we endeavor to improve how we develop and use therapies, and there are clear benefits. This requires robust data, digital biomarkers, PRO tools and optimization of research protocol to the breadth and depth of health solutions that we collaboratively create with patients, for patients. The flow of continuous quality information and person recruitment must be structured to facilitate clinical development and the platform collection of big data to improve decision-making between patients and their HCPs. As we move to a system where physicians get precision medicine and patients get personalized healthcare, we have to think about how we work together to keep changing conventional treatment to personalized care. Pharma companies must become health collaborators as part of this. This generates a new promise for personalized health care that is beyond the drug but recognizes and keeps investing in patient-centred care.

Establishing the essential components of patient centricity

The rise in consumer medicine with loyalty to new health players, tech providers and patient entrepreneurs has created an era of ‘Citizen Health Science’ where people directly engage with developers in a collaborative, heuristic methodology. Patient engagement is impactful because it increases connections with consumer groups, provides social proofing and equity, generates novel intervention targets and expands innovative health management targets. Pharma companies must provide a high-quality, trusted customer experience from the outset and identify ways to help patients understand, adapt and work with their HCPs and peers towards quotidian improvements in their health.  Specifically, this means creating a relationship continuity that builds through enabling:

  1. Data activation:  access to information that transforms health science

  2. Disease insights: access to experts for collaborative research solutions

  3. Daily motivation: access to peers to share stories of therapeutic affordance

I'll be discussing examples of how to make this happen at eyeforpharma Barcelona on March 15th in a joint panel with the European Society of Person Centered Healthcare. I look forward to meeting you there.

Joining me will be my daughter Delilah.

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