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Cracking the Patient Morph Code

Words by Danny Buckland.

This is the Age of Patient Centricity, a landmark period where vital forces are sending seismic waves through healthcare and the pharmaceutical industry.

The imperative to provide patients with much more than a pill or a potion has accelerated from a feel-good extra to a core DNA requirement, which entwines medical, scientific, and technological advances with regulatory and commercial demands.

Healthcare technology is pulsing with innovation across clinical trials, data collection, and connectivity, enabling patients to have a more direct involvement and influence over the medicines that are developed for them.

The advantages are clear: targeted treatments and focussed delivery systems that drive adherence, reduce wastage, and generate a financial dividend for healthcare systems creaking under the strain of ageing populations weighed down with comorbidities.

But there are also huge challenges to the pharma industry, as it operates along a complex chain from drug discovery to launch and aftercare. Recalibrating operating systems and ingrained ideologies can be costly and time-consuming.

Scott Gottlieb, Commissioner, Food and Drug Administration — the gatekeeper of the US healthcare system and a major global influence —has enshrined patient involvement in drug discovery guidance and stated earlier this year: “Patients are teaching us about the benefits that matter most to them and the risks that they are most concerned about. Patients are, rightly so, becoming the driving force of the medical research enterprise.”

But the transition can be bumpy with experts pointing to patchwork adoption and internal resistance to fundamental change.

“Patients are, rightly so, becoming the driving force of the medical research enterprise”

Many firms do not have agile mechanisms that work directly with patients, according to the Association of the British Pharmaceutical Industry (ABPI), which represents companies that supply more than 80% of branded medicines used by the NHS.

“Different companies do it different ways in development or in later stages and they have to find what works for them”, says Dr Sheuli Porkess, Deputy Chief Scientific Officer, ABPI. “We hear that some practical aspects are challenging as some company processes don’t necessarily work with patients; one example is as simple as being able to pay the train fare of a patient on a clinical trial who doesn’t want to wait two months for reimbursement.”

A recent PatientView study of pharma industry performances lauded improvements in patient-centric measures but drew cautioning reactions about the need to promote a deeper understanding and to have senior executives championing implementation in every department.

Craig Mills, Managing Director, Frontera, the London-based group specialising in patient behaviour, highlights that consumer mobilisation — exemplified by TripAdvisor’s potency — has entered healthcare. “Change will soon be about staying relevant to what the patient values. If they don’t, they will be deselected or even outed by patients and their competitors may thrive”, he says.

Frontera’s research has shown that 90% of patients want to play a more active role in their health, yet some pharma companies are still wrestling with how to quantify the benefits of patient centricity and connect the theme through different sectors of their business.

“Only now are companies taking a very public, more joined up approach to patient centricity and how this can improve the more holistic business performance”, he adds. “But patient centricity cannot be the responsibility of just one division. It must penetrate all aspects.”

The ABPI and the Association of Medical Research Charities recently held a conference for pharma companies to share and explore the “many benefits in establishing, managing, and growing partnerships that aim to benefit the patients sooner.”

And the ABPI believes the industry can rise to the challenge and deliver new drugs and systems designed, in part, by the patient for the patient.

“Our companies want to develop medicines that make a difference and they are aware that the patient insights are so important”, says Dr Porkess. “Their views differ from the scientist or clinician view and really help with the development of medicines that make a meaningful difference.”

“This is an exciting opportunity to co-create medicines with patients. It is the way we need to be going and it is now about getting the practical aspects in place so that we are doing it in an appropriate and sensitive way.”

“Change will soon be about staying relevant to what the patient values. If they don’t, they will be deselected or even outed by patients and their competitors may thrive”

The need for companies to understand how to make the most of the patient input across all elements of their business is the focus of PARADIGM, a collaboration of 34 public and private partners. The 30-month project is designed to find ways to “…embed patient involvement in wider health systems’ design and strengthening”, according to Nicola Bedlington, Secretary General, European Patients’ Forum.

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