This Chief Medical/Mum Officer is Not Waiting for Godot
It's time to stop waiting around - and breathe life into patient engagement
Some children collect sports ribbons. Two weeks ago at eyeforpharma Barcelona, my daughter Delilah collected her first pharma conference badge. Life is different when you live with a chronic condition – even when you’re ten years old! We were delighted to be members of a panel reviewing patient-centred care, and as is always the case when patients are given a voice, we wanted to tell our story of awareness, diagnosis, everyday challenges and how our needs will change as we surmount the obstacles of the condition called life.
I’m often asked to describe how I balance my role as a Medical Biochemist working on communication programs with the pharma industry – and being a mother and stepmother to four sentient, savvy and seriously bright children, one of whom has a growth hormone deficiency which although not life-threatening does impact on her, and our family in small ways, every day. The simple answer is that I’m Mum first, writer second and having established that as a credo, everything else just has to fall in place (or fall off the to-do list). I’m writing this on the eve of Mother’s Day having just dropped one child to a party, another to dance class, whilst running through GHD-deficient daughter’s data to see her consultant in a few days. Then I need to write my next presentation on R&D and social media to make to a Patient Advisory Group! I am ‘every working Mum’ – as was described by Facebook executives in January who summed this up when they revealed that, based on how they use Facebook 1.5x more than any other group to research and share health information, “Moms are the Chief Medical Officer of the Household.” Let’s hope the Deputy CMO (Dad) is on hand too...
Looking forward but standing still
This isn’t about parent versus parent, however – Mums and Dads pull equal weight and in the same direction. The problem that we have within pharma is that we interact with people as patients first, and struggle to recognize the person beyond the condition. Working with companies to establish patient-centered care very quickly becomes a stagnant process because we stop and say, “what’s the ROI on this?”. We approach this from a business perspective rather than a human one; pharma wants justification metrics before helping. Meanwhile, patients just want help. We stand still agonizing over how we measure how we move forward. Patient-centered care is the pharma equivalent of ‘Waiting for Godot’. While Chief Medical Officers of Families and Households don’t have the luxury of waiting to establish the perfect metric.
During the panel session, my 10-year-old made it very clear just how boring breathing in and out is from a static position. She was asked some far-reaching questions about being different from her friends, what she tells them about her condition and what could pharma do to make her life easier (she’s used to it, she knows she’ll always be small, she explains what GHD is frequently to her friends, and it’s particularly irritating when she can’t go on rides at fairs because she isn’t tall enough. Oh and could pharma make a pill instead please? Those daily injections hurt). The final question summoned the most obvious patient perspective that we neglect in trying to find the perfect ROI/KPI/any metric to measure the value of patient engagement – what should pharma do? Answer: “I just want to be taller.” People come to us for help and we turn them into patients.
Time to Breathe
Let's breathe life into patient engagement. Having worked with hundreds of patient groups in my professional capacity – and also currently as ‘Chief Medical/Mum Officer’, here is a thoroughly down-to-earth suggestion of how pharma can approach patient-centered care differently and just inhale, exhale and, yes, ‘BREATHE’:
- BOOST: Patients want tips, interventions, and interactions that help them live not that boast about a product
- REAL: Issues need to be authentic and products must work in the real world
- ENTERTAIN: It is hard work living with a condition that affects your quality of life; make light where appropriate
- ACTION: Don’t inundate; activate. Let people contribute, share, donate, add their skills to the mix
- TRUST: Let patients know you, your people, your aspirations, your dedication, your services – then your products
- HELP: Provide channels and tech that are practical in customer-friendly modes and open a long-term dialogue
- EARN: The final rule is to empower YOU to be more visible. It is ok to be here. With us. As fellow patients
In the coming months, I will apply these principles to highlight when companies get this right and consider which piece didn’t quite work and share with the readers of this column and my colleagues within pharma. Hopefully, this will move us forward into true patient-centered territory.
A pharma checklist for patient-centred care
All this is strong debate for engaging effectively with patients; however within pharma we still have to defend engagement from a business perspective. The need for metrics will not disappear, as much as we would like it to. During the eyeforpharma panel, I suggested that claiming ‘we are patient-centric’ is perhaps one of the most dangerous promises a company can make. Different patients will expect different things of that, compared with what you might realistically be able to do. Real-world behaviors don’t only apply to how pharma relates to patients, but also how pharma executives relate with one another. We ask, ‘what do patients need?’ but there is no point in ignoring ‘what does pharma need?’. Establishing an infrastructure of patient-centred care is a difficult, often thankless task where inadequate resourcing makes leading internal transformation a Herculean task that requires confidence, tenacity and at times, blinkered-vision to help an organization stop ‘waiting for Godot’ internally. The ‘Chief Patient Officer’ in a company must be as dedicated as the ‘Chief Medical/Mum Officer’ to drive change. As someone who vacillates between both jobs daily, here’s a summary of my experience on how to forward patient-centred care from the company perspective:
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Patients and companies working together can identify and address treatment inconsistencies at the outset.
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Collaborative input and sharing of peer data will lead to better research parameters and treatment options.
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Companies need to invest in digital channels and platforms and create new PRO tools that amplify the patient voice and use patient-preferred technologies that encourage innovation.
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There is a strong ethical imperative to share important decisions and stimulate bidirectional exchange of information in line with good practice.
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Solutions can be tailored to individual patient needs by provided trusted educational and real-world support and resources.
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The effectiveness of a patient-centered strategy can be measured using metrics that matter to a patient and also generate health system benefits.
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Patient benefits include: organizational trust, improved health literacy, quotidian support systems, peer connectivity, health tech that helps sustain behavioral change and lifestyle modification.
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Pharma benefits include: expedited cost-effectiveness in clinical trial design and implementation, social health meteorology and insights, novel targets, improved signaling for predictive toxicology and pharmacovigilance.
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Measurable ROI from engagement includes: relationships with patient groups, creation of PROs, volume and quality of patient support channels and data-sharing systems.
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Patient expertise should and can be implemented across the drug development continuum; patient-generated evidence for trust and social health proofing should be valued, sought and expected in the age of ‘Citizen Science’.
I enjoyed participating in the eyeforpharma panel as both Mum and Patient Expert, but it's time for a well-earned day off. Over to Dad…