A brand-new, evidence-based, self-evaluation toolkit to help pharma companies track their levels of patient-centricity
...analysing 2016-2017 feedback from:
- 2,000 patient groups worldwide
- 50+ different medical specialties
- 100+ countries
- International, national, regional and local
9 Attributes - 58 Fundamentals - 139 Questions
- Patient groups describe 9 major attributes that contribute to the process of corporate patient-centricity.
- Every one of the attributes is, in turn, shaped by numerous fundamental factors.
- For each of the fundamental factors, patient-group comments received by PatientView were reframed in the Being Patient-Centric toolkit as questions that the patient groups themselves might well pose to companies. Patient groups pose 139 questions to pharma companies that are seeking to be more patient-centric.
One of the 9 aspects identified by patient groups as being important for corporate patient-centricity.
A patient group issue to evaluate your company’s current performance against.
139 SELF-EVALUATION QUESTIONS:
- Evaluate your company’s current performance in areas identified by patient groups as important.
- Identify attributes where you feel your company already performs strongly, and validate this with evidence.
- Identify attributes where you feel your company performs less strongly, and agree priorities for improvement.
- Gather and compare views on current patient-centricity from different stakeholders in the company to track your performance over time.
- Compare performance in different countries and regions.
Why this toolkit?
Over the past decade, the increasingly talked-about topic of patient-centricity has become an aspiration of the pharmaceutical industry. The challenge is: turning ambitions into effective actions. Corporate actions intended to be patient-centric need to be chosen from a patient perspective, and then measured and assessed for impact upon the company.
However, the business of pharma is complex, and patients are distant from the processes of medical R&D (and, for that matter, from most business aspects of pharma). If patients do not understand the companies, how can companies determine what actions to take to be more patient-centric?
Patient groups can help
Patient groups have emerged as key players in healthcare systems.* Their awareness of the corporate world is greater today than ever before.
- Patient groups understand the complex business environment of pharma, and are able to articulate patient groups' own concerns and needs in a manner meaningful to all of the business functions of pharma-from the beginning, to the end, of a product's lifetime.
- The researcher has captured - in the form of a self-evaluation toolkit for industry-patient groups' knowledge of patient-centricity, drawing out the groups' ability to detail key corporate priorities and actions.
Patient groups describe 9 major attributes that contribute to the process of corporate patient-centricity. Every one of the attributes is, in turn, shaped by numerous fundamental factors.
For each of the fundamental factors, patient-group comments received by the researcher were reframed in the Being Patient-Centric toolkit as questions that the patient groups themselves might well pose to companies. Patient groups pose 139 questions to pharma companies that are seeking to be more patient-centric.
Being Patient-Centric pulls the many elements defined by patient groups as important to patient-centricity together into a self-assessment questionnaire for internal company use, aimed at measuring and tracking company levels of patient-centricity. Being Patient-Centric functions as a toolkit/roadmap that leads towards effective patient-centricity from the patient perspective.
Questions from Being Patient-Centric will be incorporated within future surveys of patient groups, ensuring that this new self-evaluation assessment tool remains up to date and relevant, and continues to represent the latest thinking of patient groups (as well as containing best-practice examples from industry). We hope that companies will adopt the toolkit, and challenge their own thinking, developing and embedding dynamic strategies that place patients at the heart of their business-making Being Patient-Centric a tool of real and tangible value to the industry.
This November 2017 launch of Being Patient-Centric is the toolkit's first roll out.
Being Patient-Centric will be updated in a year's time.
Authenticity - Actions that demonstrate a culture of high integrity
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.
Support and Services - ‘Beyond the Pill’ programmes that support the patient journey
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.
Transparency - Pricing policies, research results, funding relationships
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.
Equitable Access - Effective policies for all patients
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.
Valued Products - Products that provide real value to patients
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.
Patient Safety - Reliable Supply and comprehensive patient safeguarding
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.
Quality Product Information - Consistent, current, balanced & usable
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.
Patient Group Relations - Effective governance, communication & training
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.
Involvement in R&D - Patients are engaged and their opinions sought at each stage of R&D
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.
"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