Dear Pharma: There Is Nothing Centric About Patient-Centricity

The IOM (Institute of Medicine) defines patient-centered care as: “Providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.” Boom! Patient-centered care is the new black.

Buzzword. Buzzword. Buzzword. Corporate bingo.

Does this enlightenment mean we’ve not been patient-centered in the past? All of a sudden, a clinical age of reason is sweeping over the healthcare system with a fundamental shift in perception? Who’d have thought the patient would, should or could be at the center of care?

That’s almost as illuminating as driver safety being at the center of automobile design.

Mind blown. #sarcasm

While the philosophy of patient centricity is noble, it has proven grossly ineffective for as long as it’s been a buzzword. Why? There is a fundamental disconnect at play that few, if any, perceive.

Yet it is one that patients, and their respective patient advocacy organizations (PAOs) have never had the platform to share with industry until recently with social media as our bullhorn.

Here’s the source of the disconnect: When industry thinks about patient-centricity, it thinks “What do we need to learn from patients?” And then it proceeds to find the appropriate patients and ask them questions.. Patients, on the other hand, don’t care what industry needs to learn from them. They just care about what they want to happen.

This may seem like nuance but, in the instance of cancer patients, we don’t just want to live, we want to survive with dignity. We want to want to be able to have children if we live. Or go back to college if we live. Or play the piano again without debilitating neuropathy if we live. (I’m talking about myself if you hadn’t guessed)

The methodology for patient-centricity is the problem. Information gathering is based on necessity and not reality and implementation is based on economics and not humanity.

Patient-centricity has now been a buzzword for the last decade, give or take, but it only entered corporate messaging recently. Despite this, as the CEO of a very large millennial patient/caregiver community, I interact with thousands who feel less at the center of their care than ever before.

As just one example, young women diagnosed in their fertile years rarely have a conversation about sterility risk from treatment, let alone options to preserve their fertility in advance of the start of treatment This is obviously unconscionable. Decisions about parenting are being made by doctors and payers on behalf of unsuspecting, sick young women.

Patient-centric? Feh!

With all due respect, you are not automatically a “patient-centric” company just because you added that term to your marketing materials and hired someone with an eponymous title who travels the country with a spectacular LinkedIn profile on fact-finding missions to buy nonprofit CEO’s lunch to data mine their insights.

And don’t get me started on regulatory. We in the Patient Advocacy sector are not naive to The Physician Payments Sunshine Act. (It just rolls off the tongue, doesn’t it?) This onomatopoeic law is killing all of us. It stifles innovation (with a lower case “i”), presents innumerable encumbrances to actually getting anything done and ties up any possibility for success in a sea of red tape negotiations.

My point is that that a re-imagining of patient-centricity needs to occur STAT. Otherwise no one wins.

Recommended Reading: Regulatory Killed The Radio Star

Cutting advocacy budgets year over year shows a lack of commitment to real patient centricity. With that said, there are an enlightened few companies who understand its importance and are able to achieve actual results. This budget is not charity, as is typically the case. It is a business investment and should be considered as such.

PAOs often have deep patient engagement and differentiated key insights that industry regulations prevent you from taking full advantage of. But when we work together — not in an “advocacy/charity” sense, but in the problem-solving sense — we can accomplish things that separately were seemingly implausible to achieve.

PAOs are at fault too. We can’t just take your money and not expect to produce ROI. And yet, there are a few nonprofits for whom ROI is in their DNA. They operate using program management and evidence-based patient outcome reporting. Pharmas that choose to meaningfully engage with these groups benefit from a measurable competitive advantage by viewing us as business partners, rather than charities looking for a handout.

To paraphrase from an article by Cheryl Lubbert (President/CEO, Health Perspectives Group,) “When we integrate patient centricity, it’s really about listening to the experiences of our customers and internalizing them throughout the organization to create better products and services, better engagement and adherence, and relationships that last.”

Operators are standing by.

And that’s all I have to say about that.