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DTC NewsGuest Columnist

Read this Before You Automate Patient Content

December 1, 2025 0

“When you talk to a doctor or a lawyer, there's medical privileges, legal privileges. There's no current concept of that when you talk to an AI, but maybe there should be.”

—Sam Altman, The Atlantic (2024)

Take it from the CEO of OpenAI: Confidentiality and privacy protections are among the biggest unresolved issues for those interested in using emerging artificial intelligence tools in settings such as law and healthcare. Strict professional privileges exist for a reason. We ask people to share the most sensitive moments of their lives so we can educate, support, and guide them. They open up because they believe their words will be handled with care, kept in context, and never used against them.

AI promises speed and scale, but it does not confer privilege. The tension shows up in daily work. A team wants to turn a powerful interview into a plain-language explainer. Another wants multilingual versions of an adherence story. A third needs a short script for a Patient Ambassador™ video. AI could help each project move faster.

Yet the raw ingredients (transcripts, recordings, voice messages, emails) can contain names, dates, locations, adverse events, trade secrets, and distinctive phrases. Feed those into a general model and you may create a trail you can't fully see or control. Even when policies say inputs aren't used for training, exceptions exist. Retention rules evolve. Humans sometimes review snippets. The words you were trusted to protect may travel further than you intended.

Evolved Privacy Policies

Across the world, legislators have passed regulations to protect their constituents from overly intrusive data harvesting practices. The life science industry and their agencies have established processes to comply with regulatory mandates, in many cases being more restrictive than required. For example, the European Union's GDPR rules have emerged as the industry’s best practice, even outside of the EU's jurisdiction. The point is to be as restrictive with data, and as respectful with patients’ safety and privacy, as possible.

Such good faith efforts are important when building a trust-based partnership among equals. And they're expected. Privacy, for patients, isn't abstract. It's protection from harm that could affect an already vulnerable population. Patients and caregivers are motivated to work with the life science industry for many reasons: human connection, empowerment, motivation, education, inspiration. Becoming a dataset or having sensitive information exposed isn't one of them. So, to enter the AI era respecting privacy, three rules apply.

Rule #1: Guide the Process

The lead in patient engagement needs to be held by a sentient human being like yourself. A human can be held accountable. A human also knows that they could, now or in the future, be a patient themselves. So, they understand the gravity of their responsibility and know how to address concerns and apprehensions.

This only works if that human is more than just an order taker. They have to be familiar with the patient, competent at their craft, and able to guide through a regulatory-compliant cocreation process.

Rule #2: Have a Conversation About Consent

If a patient contributes to creative content, they should know exactly how that piece will be created, where AI may help, and where humans will review.

They should understand the process for creation, publication, and future reuse. If they change their mind, the path to withdraw should be simple and honored quickly. A checkbox at the bottom of a long policy is paperwork. A clear discussion about purpose, limits, and control is respect.

Rule #3: Maximize Meaning, Not Data

Once the ground rules for cocreation are understood and the humans have sorted out how they will work together, AI assistance can come into play. Generative AI can be a detriment to authenticity and has a measurable image problem within the patient and caregiver community[i]. So if you introduce AI, do so only on a need-to-know basis and preferably only on behind-the-scenes processes.

For example, for an LLM to assist with drafting, it won't need the full, raw record of life. It will need meaning. That means removing identifiers and letting AI operate on a focused, safe excerpt or summary of the original notes. Always ask: “Is this information necessary to accomplish what we're looking for?” If the answer is yes, and if the information is privileged, manual work or a secure, on-site system is required.

Keep the Human Voice at the Center

The reason we always emphasize authenticity is because real human stories change behavior more than engineered, sterile content ever will. AI can help translate and organize those stories. It cannot live them.

We can safely expect AI to become better at mimicking human nuances: imperfect phrases, deliberate pauses, heart-wrenching rawness, elevating inspiration. But as generative content floods every channel, audiences will reward not only what feels true but what they know to be real and accountable. Whatever you do, never pass artificial patients off as real ones. Break that promise once, and all your work could be called into question.

Respecting these guardrails prevents rework. When teams avoid over-collection on the front end, they spend less time redacting. When consent is explicit, legal reviews move faster. When provenance is built in, Medical-Legal-Regulatory discussions focus on substance, not process.

The result is a speedy and satisfying mode of engagement with predictable cycles, fewer surprises, and assets that stand up months later when someone asks, “Where did this come from?” If you wouldn't want to read a prompt and its source materials in a public forum, don't put them in a model you don't control.

Environment and Expertise

Teams that want to use AI will need the right environment and the right expertise. The environment should match the stakes: private instances when identifiable data is unavoidable, zero-retention settings, strong access controls, short retention windows, encryption in transit and in storage, and separation between systems that store identifiers and systems that generate content.

The expertise is the human part: interviewing that captures meaning without excess detail, editorial judgment that keeps education separate from advice, cultural fluency in every language we publish, and regulatory rigor that anticipates hard questions before they're asked.

This is not easy to build, but the right agency can help select the right use cases for AI, set up the protected environment, convert legal principles into usable workflows, and defend the final product. After all, they know exactly how it was made.

AI can have a place in responsible patient engagement. Privacy has the first place. Until society gives AI conversations the protections we expect from medicine and law, act as if every patient word entrusted to you is a promise. Keep that promise, and you'll earn the speed AI offers without spending trust you cannot afford to lose.

[i] Data from a recent survey SNOW conducted with 297 patients and caregivers suggests there is a strong negative feeling toward generative AI in patient content: 42% are not open to AI being used at all in the creation of content involving patients or caregivers.

Oliver Portmann

Tightrope.webp
Xpectives.Health in Focus

Unlocking Patient Engagement: The FDA Wants You to Know This

March 12, 2024 0

Career highs and lows sometimes feel random: We often call a success “lucky” and a setback “unfortunate.” In biopharma, we may think of a drug launch that turns out to be a blockbuster as such a lucky break. But possible setbacks lurk all along the drug life cycle: The molecule might not meet its endpoints, or we might hit a snag with approvals or with payer formularies, or the market might be much tougher to penetrate than anticipated. Our minds don’t need to wander all the way to the spectacular ethical and legal failures of the Sacklers, Shkrelis, and Holmeses of the world to understand that, in our industry, you can find boom as well as bust.

However, here’s the truth: Even if you can’t control your successes and setbacks completely, they’re not entirely random either. Our careers have higher peaks and flatter valleys if we pay attention to certain seemingly minor details that could blow up to become major problems. The fear of becoming the next Purdue or the next Turing can sometimes cause some degree of paralysis. But it would be foolish to try and solve business problems by refraining from doing business. More often than not, it’s the omission of regulatory and ethical precautions, rather than the actual conduct of marketing, that’s the problem.

Working with the Consumer

Take patient engagement, for example. It’s a crucial part of any medical marketing plan, and not only because the other strategies are becoming harder to execute—we all know that pharma reps have a harder time getting in front of doctors. But more profoundly, the empowerment of patients in their healthcare decisions has revolutionized the way pharmaceutical companies approach the market. It’s not just about keeping pace with industry trends, it’s about leading the charge in a healthcare environment that increasingly values personalized care. In today’s digital age, patients have access to a wealth of information and a voice through social media platforms, patient forums, and advocacy groups. They are well-informed advocates for their health, often arriving at the doctor’s office armed with research and questions about their treatment options. This shift requires pharma marketers to engage in two-way conversations, where listening becomes as crucial as informing. In this environment, the role of the marketer evolves to that of an educator and facilitator, providing the tools and information necessary for patients to make informed decisions about their care. If you’re a pharma marketer in 2024, whatever you do, don’t ignore the consumer.

But not everybody seems to understand that working with consumers in the pharma industry differs from working with consumers in other industries in important ways. If you let inexperienced marketers implement strategies that might work in other industries, you can expect FDA warning letters, or worse, to land on your desk. Does this mean patient engagement is dangerous or a bad thing for companies or patients? Of course not! What it means is that biopharma marketing requires an approach, expertise, and infrastructure that are specialized. A Patient Ambassador® Program is not like running any other speaker bureau. A patient video is unlike a consumer review, and a patient advisory board is unlike conventional market research. To a layperson, the difference may not be instantly apparent, but regulators can tell what is what and will enforce their rules.

Efficient Compliance

First, the agency handling patient engagement must be familiar with the regulatory rules and obligations that apply. This starts with thorough training. From adverse event reporting to privacy protections, from fair balance to approval processes and honoraria, teams can only be successful in this if everyone receives training on how to handle any given situation. This requirement extends to all members of the organization, not just those directly interacting with patients. These trainings also need to be regularly updated and refreshed annually.

Second, your patient engagement agency also needs to invest in the technical infrastructure that enables team members to efficiently fulfill or even automate their regulatory duties. It can’t work if, for every adverse event, the exact reporting procedure has to be reinvented or rediscovered by someone who hasn’t submitted a report before. It also won’t work if compliance with GDPR is left to individual team members to sort out which piece of data needs to be purged on any given day.

An Authentic Perspective

Third, beyond the rigidity of regulatory compliance, your agency must also understand the softer, yet equally vital, nuances that come into play when working with patients. Your initiative must emphasize authenticity over brand promise. With consumer goods, it’s commonplace to market with a brand promise that’s aspirational and exaggerated: By buying this or that beverage, car, or vacation, you hope to get closer to—or become a little bit more like—the person you see in the commercial. Drugs are no status symbols, and nobody wishes to become a little bit more like a sick person. You’re not interested in being enticed by someone who doesn’t know anything about your condition, no matter how good-looking or otherwise admirable they may be. The perspective that counts is that of people who know what you’re going through. Most of the time that will be other patients or caregivers. Actors and models have no place in this unless they also happen to be real patients.

Finally, the team you put together must treat patients like the human beings they are. This includes being realistic in expectations and anticipating limits of any kind: Mobility, cognition, fatigue, dietary restrictions, vision, hearing, and emotional trauma are some of the factors that commonly play a role. If you expect a patient or caregiver to open their heart (or home) to your team, make sure you enter with respect and leave things the way they were. You don’t want to roll up with a crew truck and run over the patient’s manicured garden (figuratively or literally). You also don’t want to rush patients along or disrespect them with insensitive lines of questioning. You’re not dealing with career talent but with individuals who can provide tremendous value if you allow them to show their true selves.

Setting a Standard

Companies and executives find themselves in very uncomfortable positions if their teams and vendors neglect to take care of important steps like these that keep the organization safe. Incidentally, by safeguarding their reputations and legal compliance, biopharma teams also happen to serve and protect patients’ interests, so it’s a win-win. Nobody wants to be on the front page of the Wall Street Journal for the wrong reasons. Companies that manage to strike the delicate balance between assertive market presence and steadfast legal and ethical adherence do not just avoid the ignominy of negative press—they set a standard for the industry. By fostering a culture of compliance, championing patient-centric approaches, and continuously innovating on engagement strategies, biopharma entities not only propel their brands to the forefront but also underwrite the narrative of their own integrity.

Walking the tightrope of biopharma marketing requires a blend of agility, foresight, and unwavering ethical commitment. Compliance and patient satisfaction aren’t lofty goals, they’re the foundations of success, the cornerstones of marketing excellence. That’s how pharma marketers extend career highs and mitigate any potential lows.

Oliver Portmann

DTC National

Telling the Healthcare Story

May 28, 2015

Patient non-adherence is a serious public health concern. But three factors – motivation, recall, and comprehension – have been shown to yield the best results for combatting this issue. To leverage the power of these key influencers, brands should consider utilizing narrative communication methods. Specifically: Strategic, regulatory-compliant, patient-driven storytelling.

Sometimes it’s striking how healthcare topics that have been around for centuries remain current and highly relevant. Think of the Hippocratic Oath and how it encouraged patient centricity millennia ahead of our time. Or think of Molière’s classic 17th century comedy Le malade imaginaire and how it highlights the responsibility of care partners and the balancing act between a patient’s and an HCP’s authority. Of course, there are revolutions in the medical field that do not simply recycle old ideas but are genuinely new: Science and evidence-based medicine was one of those revolutions; the institution of regulatory bodies to oversee the pharmaceutical industry was another one; and public health policies as well as private health insurances have also all played their part in shaping healthcare into what it is today. Yet a lot of things that preoccupy our industry have in some form or other been around for a long time.

One current trend that made me think of that is the shift in who’s sitting in the driver seat on treatment decision-making. Shifts in policies around the globe, due to fiscal restraints and an aging population, force patients to carry a larger share of the cost burden, so naturally patients demand a bigger say about their care. Another factor that gives patients more weight is, of course, the way information is now accessible. The web and social media make it possible for patients to form their own opinions before they meet with an HCP. The negative side of that coin is the difficulty for experts and regulatory bodies to enforce quality standards of that information. So with patients covering more of their own healthcare costs and making up their own minds online, patients and HCPs again enter into a delicate balancing act of competing authority, reminiscent of the one described by Molière, even though, of course, there is no comparison between the expertise and ethics of real-world 21st century doctors and the ones caricatured in the 17th century play.

Double-edged sword of emotions
The fact that patients assert themselves in the doctor’s office has major consequences on how treatment decisions are made: An expert HCP may still be weighing statistical significance, relative risk, absolute benefit, effect size, sample size, and whatever else is available for rational treatment decision-making. But this process is now compounded with a patient or care partner who responds much more strongly to personal experiences and emotionally charged anecdotes. The bad news is: Emotions can undermine medical best practice. Just consider parents who actively choose to expose their children to the risk of serious infections rather than to provide them with the protection of a vaccine.

The good news is: Emotions can just as well be a powerful driver of medically sound decisions. Many HCPs in their everyday practice point to specific anecdotes to illustrate how their proposed prescription has, in concrete cases, helped others with the same condition. People respond to stories, and they like to hear them. We are all storytellers, and we instinctively prefer to receive information in this approachable way over having to analyze intellectually challenging piles of data. Several pieces of research indicate how narrative communication can be a tool for health behavior change.[1],[2] Clearly, here’s a call for the life science industry to support adherence and other positive behaviors through storytelling, to blunt emotionally charged disinformation with emotionally charged information.

The cost of non-adherence
No matter how captivating these stories are though, they are easily dismissed and can even backfire if they lack authenticity. You cannot just tell stories and expect them to have the desired effect. Your stories have to be true, believable, relatable, and vetted for the right messaging. In other words: They should come from people living with the condition concerned who, at some point in their journey, made good decisions for themselves. Even people who had made poor health choices in the past can demonstrate to others just like them that anybody can eventually find a more positive approach to life.

Improving medical treatment adherence is of course of major interest to our industry: $188 billion of lost revenue is attributed to patients not taking their medication as prescribed. That’s just the industry side, but what about all those avoidable hospital readmissions? What about the public and private resources for treatment and prevention going to waste? The man-hours lost from people who can’t work, because their disease has gotten the upper hand? The material loss to the whole of society through non-adherence is estimated to be $300 billion in the United States, and that doesn’t even count the human suffering from preventable pain and death.

Motivation, recall, comprehension
It is often presumed that non-adherent patients willingly reject their prescriptions; that’s why sometimes we still hear the expression “non-compliant” in this context, even though in the UK the terminology has shifted to “non-concordant,” and internationally to “non-adherent,” in order to stop implying disobedience on the patient’s part[3]. The perception of willful non-adherence focuses on patient motivation alone and generously overlooks all of the other factors that play a part in the puzzle. Patients may also simply forget to follow their treatment (patient recall). Or they may have misunderstood their physician’s instructions (patient comprehension). Or it could be external factors, such as medication access, that cause patients to go without the right treatment. To address external factors, some companies have co-pay assistance programs, or they join advocacy groups in their lobbying for improved access.

For patient factors such as motivation, recall, and comprehension, narrative communication has been shown to be the strategy that yields the best results. Specifically: Strategic, regulatory-compliant, patient-driven storytelling. As fMRI studies at the University of Princeton have shown, storytelling can lead to neural coupling, where the brains of listeners essentially mirror activities happening in the brain of the storyteller.[4] This means that if the storyteller shares an authentic, subjective perspective on why he or she adheres to treatment, the audience will likely feel the same way about it. Through neural coupling, a storyteller who shares a personal account of events will get the audience to almost experience the same thing and go through the same emotions and the same rational thoughts. The increased levels of attention and alertness that come with following a story improve intellectual processing of the content. In other words: The audience understands better and will also remember better.

The peer factor
People diagnosed with a life-changing condition and those caring for someone newly diagnosed long for nothing more than to speak to someone just like them. Of course, they want to exchange ideas on how to best cope with their own situation; but more than that, they really want to get hope and inspiration from strong peers who can act as role models, and they want to know they’re not alone with this disease. No doubt: When you’re diagnosed with a life changing, scary disease, you tap into any resource you’ve got. You’ll go online, consult medical books and journals, and seek advice from HCPs, friends, and family. You’re not going to let the dry language of textbooks bore you out of reading them. But being personally affected, you’ll also soon realize how overwhelming all this information is, and how difficult you find it to see the right path for yourself. So stories come in as an additional resource for you, acting as a compass in the vast ocean of information you’ve got. Therefore, an audience of people affected by the disease as patients and care partners will resonate most strongly with stories, just like they’re also most likely to dive into the details and data and seek as much information as they can get.

The most credible messenger for any target group is a peer. Testimonials and personal recommendations by people in our inner circle have always had the strongest influence on our most important life decisions. We trust people who are just like ourselves more than total and utter strangers. That’s why the storyteller should share the background of the target demographic. Especially when it comes to cultural backgrounds, we often find that the patient journey can look markedly different from one population to the other. Hispanic epilepsy patients, for instance, sometimes find it hard to relate to the epilepsy story of a Caucasian, simply because their own experience with friends and family doesn’t match what their Caucasian counterpart is sharing, as certain superstitions surrounding epilepsy are more common in Hispanic communities than in other parts of the population. So it makes sense to choose spokespeople who don’t just speak the language but who can also say to their audience: “Yes, I’ve been through that as well.” When you work on a disease that affects African Americans more than the rest of the population, of course you’re going to make sure you recruit a suitable proportion of African American Patient Ambassadors®. In a specific case my colleagues at Snow Companies worked on, the pharma company involved created targeted info packages, including culturally appropriate multimedia stories. The creation and distribution of this award-winning material didn’t just get the word out to the community but created lasting ties with African American doctors and advocacy groups. So it’s well worth it to give a voice and a platform to vetted patients of the right demographic to talk to their peers.

Engaging the disengaged
This doesn’t mean that the value of a personal story is lost on audiences not directly affected. On the contrary, compared to other outreach efforts, stories are the most likely way to get through to previously unengaged audiences. In other words: If we need to reach, say, at risk populations who should get tested for a disease, it is all but imperative to give a voice to those who have a personal perspective to share that illustrates the need to be proactive. Policymakers, HCPs, and various other stakeholders can also benefit greatly from patient stories in order to make decisions informed from all angles.

Stories are a constant in human communication. They’ve been our way of teaching and learning since the beginning of humankind. And they’re not foreign to healthcare either. Patients and care partners who share their stories have been as universal as Hippocratic patient centricity, or patient-doctor sparring about choosing the right treatment option. What’s new though is that we are now aware of the power of stories. This helps us influence the narrative to improve health outcomes to the benefit of all. It’s worth tapping into this great potential.

References:

[1] T.K. Houston, J.J. Allison, M. Sussman, W. Horn, C.L. Holt, J. Trobaugh, M. Salas, M. Pisu, Y.L. Cuffee, D. Larkin, S.D. Person, B. Barton, C.I. Kiefe, S. Hullett (2011) Culturally Appropriate Storytelling to Improve Blood Pressure: A Randomized Trial. Annals of Internal Medicine, 154, 77-84.
[2] L.J. Hinyard, M.W. Kreuter (2007) Using Narrative Communication as a Tool for Health Behavior Change: A Conceptual, Theoretical, and Empirical Overview. Health Education & Behavior, 34, 777-792.
[3] E. Vermeire, H. Hearnshaw, P. Van Royen, J. Denekens (2001) Patient adherence to treatment: three decades of research. A comprehensive review. Journal of Clinical Pharmacy and Therapeutics (2001) 26, 331-342.
[4] G.J. Stephens, L.J. Silbert, U. Hasson (2010) Speaker-listener neural coupling underlies successful communication. Proceedings of the National Academy of Sciences of the United States of America, 107 (32), 14425-14430.

Oliver Portmann