What Cancer Researchers Can Learn from Direct-to-Consumer Companies

(Harvard Business Review) – Organizations striving to find new ways to attack cancer have much to learn from direct-to-consumer (DTC) companies. Specifically, they can profit from DTC firms’ expertise in persuading their customers to provide and share their data. This is something many cancer patients don’t do because they are unaware of the data’s importance or their power to instruct institutions to share it.

Advances in genome-sequencing technologies and powerful analytics are increasingly being used to pinpoint errant genes and other molecular abnormalities that drive cancer’s growth. This knowledge can be used to help doctor match some patients — for example, lung cancer patients with mutations in the ALK or EGFR genes or breast cancer patients’ tumors that overexpress the HER2 protein — to treatments that target the unique aspects of their cancer. This personalized approach could one day help all people with cancer benefit from smart medicines, but only if patients opt to share their sequencing data and other health information and insist that health care organizations comply with their wishes.

That’s because researchers must deeply analyze a massive amount of patient data, starting with patients’ sequencing data, to pinpoint cancer-causing mutations. Access to a massive amount of patient data is key because it ensures two things: first, that abnormalities that occur only sporadically aren’t overlooked, and second, that random abnormalities that occur by chance are spotted as false discoveries. These insights — again, made possible only by learning from as many patients as possible — inform our collective knowledge of cancer and effectively predict how to best treat it in the individual patient.

Unfortunately, far too many patients remain hesitant to share their health data, even though they routinely share all sorts of personal data when buying consumer products online. The reasons for this, of course, are many. Some have privacy concerns. Some are not asked to share their data or don’t know how to do so. We suspect that many others just don’t understand the value of their data; they are unaware of the powerful role their data plays in advancing research breakthroughs, let alone that sharing it may give them their best shot of beating the disease.

What can the field of precision oncology learn from DTC and direct-to patient (DTP) companies that have amassed a treasure trove of personal data? To find out, the HBS Kraft Precision Medicine Accelerator, which we cochair, recently brought together leaders from some of the most innovative DTC companies: Under Armour, Rent the Runway, Wayfair, Peloton, and Uber, to name a few.

Each company collects vast amounts of customers’ personal data, from their browsing history to their recent purchases. Using sophisticated computer algorithms, each then turns this data into insights about future behaviors, from what running shoes an individual will want to make her a better athlete to what dress she just has to have for that special occasion. This creates value for consumers — by saving them money, saving them time in making choices, or by informing their decisions — and allows the companies to retain consumers over the long haul and amass even more data.

What can the field of precision oncology learn from this DTC approach?

Know the patient. Organizations collecting patient data — including academic medical centers, foundations that sponsor cancer research, and pharmaceutical companies — must first identify the needs, pains, hopes, expectations, and behaviors of each person living with cancer. Where do they get their health information? How well do they understand their personal health data? Do they access it? Do they share it? If so, how? Answering these questions will allow organizations involved in cancer research to meet patients where they are, just as DTC companies do.

Tell a great story. The best brands use storytelling to amplify the company’s manifesto and mission. Under Armour is not just selling hoodies; it’s building better athletes. Rent the Runway is not just dressing the world’s women; it’s building self-confidence. People in the health care field often talk in industry jargon and drop buzzwords like “sequencing” or “biomarkers” that just don’t resonate with real people with cancer. They must use heartfelt storytelling, with emotional arcs, to connect with patients in a meaningful way.

Use social media in an effective way. DTC companies are pros at using social media to connect with consumers. The precision oncology space would greatly benefit from adopting a similar approach by reaching patients and caregivers, particularly those identified as influences or ambassadors, on multiple social media platforms where they get most of their cancer-related information.

Start small to go big. An email address is the beginning of a new relationship. If members of the health care community collect this and other data — a “follow,” a “like” — as DTC companies have long done, they will be well on their way to engaging patients in their first conversation about data sharing. It will take time to build trust, of course. But without collecting basic contact information, you can’t get started.

Create value. A number of DTC companies have created membership programs that reward consumers for their continued loyalty with something of value to them: discounts, freebies, and so on. To encourage patients to share their data and keep them engaged, health care organizations can offer similar incentives — for example, alerting patients to new clinical trials of medicines that target their specific mutations, or even something as simple as an exclusive hat or T-shirt.

The expectations and the motivations of people with cancer aren’t all that different from those of other consumers. By applying the knowledge and best practices from DTC companies, organizations that want to encourage the collecting and sharing of personal health data can be more effective in enlisting patients in the cause. And that, in turn, will make a major difference in finding new treatments and cures for cancer.