BEING PATIENT-CENTRIC
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A brand-new, evidence-based, self-evaluation toolkit to help pharma companies track their levels of patient-centricity
... analysing 2016-2017 feedback from:
"The new self-evaluation toolkit explores the most practical and comprehensive approach I have ever observed across the existing assessment frameworks for patient-centric programmes and initiatives. Every aspect must be taken into consideration when analysing what a company does to address unmet patient needs, hopes and expectations delivering real value. The industry, patients and community still have a challenge of inconsistency and absence of unified methodology clear for all and easily implementable by several stakeholders. I believe that the tool will help to identify any gaps/opportunities within engagement with patients as well as caregivers, advocates, activists and members of patient organisations; develop patient-centric strategy and address cross-stakeholder inconsistency." Dr Oleksandr Gorbenko, ViiV Healthcare |
9 ATTRIBUTES:
One of the 9 aspects identified by patient groups as being important for corporate patient-centricity. 58 FUNDAMENTALS: A patient group issue to evaluate your company’s current performance against. 139 SELF-EVALUATION QUESTIONS: To help:
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Answers to all questions should be “yes”.
Note: The attributes, fundamentals, and questions are currently at pilot stage, and are being further validated by testing with patient groups in 2018, when the 2nd edition of Being Patient-Centric will be released |
Patient groups judge companies by their actions, and how they live up to their promises. Most companies will now claim to be patient-centric. However, there are still real differences in how they are perceived by patient groups, and in how well patient-centricity is embedded, lived and demonstrated in the organisation. Patient-centricity is key to each company’s reputation with patient groups, and means that a company needs to demonstrate integrity and authenticity through all its actions.
Ensuring that patients have broad access to a company’s products is a commercial necessity and obviously of critical importance to patients in need of treatment. Patient groups have played a key role in shaping Health Technology Assessment (HTA) policy, but the issue to patients is not constrained by new products and funding. It includes geographical issues, disability and mobility and unlicensed indications. To be patient-centric, patient groups tell us that industry needs to look beyond access for the most recent product introductions and ensure that all patients are included in access strategies regardless of the returns to the company.
Companies have tried to provide more usable information than the official Patient Information Leaflet (PiL) to convey information, but efforts thus far have been inconsistent, and primarily only for new or promoted products. They are also still constrained by the licence which tends to exclude the context or real-life usage. This attribute reflects the legal constraints but still highlights a number of actions and measures that could be undertaken to meet patient expectations.
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From the patient perspective getting medical treatment is just one part of their overall journey. Patients can face numerous challenges on receipt of a diagnosis. They may have problems telling friends and family about their diagnosis. They may then struggle to understand the nature of their medical treatment and the risks and benefits of all the treatments on offer, or in following complex treatment regimes etc., So, from the patient perspective it is important that healthcare companies, including pharma, not only understand all the issues that patients face ‘beyond the pill’ but also provide assistance in dealing with them.
What patients fundamentally expect from the pharmaceutical industry are new and improved products, and solutions to their personal condition(s). As this is the single most costly and rewarding activity pharma undertakes it is always going to bring conflicting issues into focus as pharma aims to bring value to patients, as well as return to investors and shareholders.
Most companies undertake significant interactions with patient groups. The depth and complexity of these interactions vary a lot, but all of them contribute significantly to patient groups’ perceptions of industry. Having robust policies, consistent approaches and control systems, as well as good intentions, is critical.
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Significant changes are taking place, across business sectors, to increase transparency. The pharmaceutical industry continues to work on several issues of transparency driven by patient and consumer influence, regulatory demands and the understanding that it is an essential component in building and maintaining trust with patients and healthcare professionals. Some of these aspects are framed under standard headings such as financial governance, clinical trial reporting and disclosure of payments. Patient group perspectives, however, add less defined but nonetheless important areas of transparency—such as, accepting responsibility and acknowledging mistakes.
Among the key issues that influence patients’ perceptions of industry is one of the most significant — unexpected adverse events, safety issues or the lack of supply of medicines previously available. Despite robust regulatory frameworks, the development of new medicines carries with it risk, which will inevitably arise. Truly patient-centric companies go beyond what is required by regulation, and focus on addressing the potential risks to individual patients — by considering patients as individuals: their physiology, co-morbidities, or risk of drug interactions.
Patient groups tell us that product development lies at the heart of patient-centricity. To ensure research efforts are focused on patient-valued outputs their involvement throughout the R&D process is imperative. Patients do believe that they should be engaged from the outset (alongside other healthcare stakeholders) in setting research priorities, right through to studying real-world evidence of product performance and product withdrawal/replacement at the end of a product’s lifecycle.
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