Oncology got me into the pharma/biotech marketing business. Well, I guess a more honest statement is someone who had cancer got me into this business. My sister. She had melanoma. Now since I usually write about marketing, why the heck am I indulging my own experience?
Because it is as universal as it gets. And the need for oncology patients is greater than ever, the engaged patient is not getting the education and emotional support they need. But we can get back to that.
I just spent 4 hours surfing oncology Web sites, as if I were a patient or caregiver. I crossed nearly 10 different forms of cancer. I walked in the patient's shoes, or my own from years ago…and while the treatments for so many forms of cancer have advanced, the Web site experience just reeks of not getting that these are people who are scared, perhaps being told they will be given your brand…it simply has not gotten much better.
When I was designated the "family researcher" for melanoma in the middle stages of her condition — lymphh node removed from original site, chemo begun — I felt powerful;; Ha, I was the only family member smart enough about the Web to find what we really needed: the Answers. The Holy Grail of the Internet — that deep seated irrational belief that if you keep Searching, the truth, some truth, will be revealed. And you can sit back and say, "Ha, I found it! As much as you hid the information, or buried it, I rooted it out and found it!"
But what I found was of little or no use; my Mom would ask, "Could you look up side effects for this type of chemotherapy? Your sister is feeling awful." I would immediately dive right in. Back then everyone used Yahoo – and I searched and searched page listing after page listing. I went to .org's, .gov., foreign sites, message boards, on and on…and then I would just stop. Exhausted. Frustrated. Angry at what I had to do next: call my mother and give her some lame, nearly useless advice I'd printed from some lame nearly useless Web site.
So, as the questions piled on from the immediate family, the answers got harder and harder to find. And everything was in text, and often led to a labyrinth of links here and there and more often than not, nowhere.
Melanoma was particularly hard — all there was was IL-2. Now, so many once-untreatable cancers have choices they never had before. The patient can actually have a greater degree of hope than ever, education and self-empowerment. But do the Web sites reflect that excitement?
I have had the fortune to pitch, work on, study, oncology brands. But when it comes to Internet presence and branding and information, I'd be hard pressed to tell you many Web sites I'd recommend.
And what makes me saddest of all — yeah, throwing in a little more emotion — is that there is no greater need for human engagement than a patient and family suffering from cancer. What seems to have occurred from a marketing perspective is that many brands have figured out financial reimbursement is huge, and that is surely a Best Practice. Others? Patient hot-linesstaffed with nurses. Patient videos that are genuine. Side effect management. Teleconferences. Online "buddy" matching.
But the Worst Practices still reign on a majority of brand sites. No video. Cold, antiseptic text that is often so unfriendly to read and awful to print and written as if each word was tortured. PDF's that have happy smiling faces of bad stock photography. And the sites are so lightweight; it really seems to a sufferer that the company just does not care, and that all authority and education lies in the hands of the oncologist and their team. (What really amazes me is also that e-Detailing has become so engaging, but those same lessons of how to engage the doctor also apply to the patient, yet no one seems to have connected those dots.)
And that insight is so untrue, so full of the blinders of science over emotion. The oncologist and their team vary in what they can offer. Will someone realize that in this world, even the desperate patient will get angry and resentful at being made more a victim by not having access to EVERYTHING they need — and for most oncology patients, that need evolves over time. Ever Stage IV drugs should service that.
And the needs are so humanly basic and yet so ignominiously ignored.
I need to understand what I have. What are my options? How do they compare? What will it cost? How will I feel? What can I learn about the science? Ar there others like me who have gone through this and survived? Are there support groups? Can you send me emails that help me? On and on…the needs are so evident. Universal. Common sense.
BUT, a text-based, flat, cold, information-driven site is not a brand experience. It is not helpful. It is the opposite. Do not confuse a thorough Navigation Bar for a good patient experience. A list is not what people need. They need to be engaged, spoken to, helped. If anything a cold site speaks volumes about a different form of efficacy — the efficacy of compassion. Does this company, this drug, even care about me, the patient?
One category "gets it." Breast Cancer. Almost any site — branded, unbranded — is engaging and offers good information and some support. Herceptin (www.herceptin.com) is particularly strong. Other models? The epilepsy category does engagement and has a patient sensitivity that is very well done — www.vimpat.com, www.keppraxr.com, www.topamax.com. Or ADHD — www.focalinxr.com, www.vyvanse.com among others. Alzheimer's Web sites are also worth reviewing. Also, some of the depression sites and RA sites are excellent. They get the mix of emotional and rational information and engagement needed.
So, although I never do this, I have call out a few brands that need to hand over their sites to patients and an advocate. These brands need to find the power of the heart to help patients, the use of video and other learning techniques to increase information retention – Nexavar, Sutent, Affinitor, Gleevec, Revlimid, Avastin – actually the list is too long. Why?
Because I was that caregiver. And the lack of engagement, the lack of clear, usable "answers", prevented me from helping my sister in the way I had been asked to. The lack of humanity, the poor, unsatisfying Web experiences, wore me out then and they have now.
This was unlike any blog I have ever written. Why? Well, last week was about story-telling, and I just told mine. But there are thousands and thousands of people suffering from the most awful diseases, and what do they get? Here, print this out.
My advice? Walk in your patient's shoes.
Learn more about how branding works to your advantage.
Think about what you would want and do it.
My families story does not end, though my sister's life did. In her last months, she used her energy to create a foundation for melanoma — http://www.foundationformelanomaresearch.org/— and worked to get the famous WISTAR Institute and her employer and everyone she ever knew, involved.
Once sitting in a room of desperate, depressed and yet hopeful melanoma sufferers, one said, "I have looked for answers everywhere, and I feel like I can't get any, I just don't expect anything anymore."
She looked up, and quipped, "Expectations? I'm just happy if they validate my parking."
Maybe this was her story, not mine.