Yes, that's right; patients. Not doctors, nurses, pharmacists, payers or other HCP's, but patients.
Patients are the people taking the therapies, educating themselves, their families and other sufferers about the disease, and quite frankly, often the marketing people responsible for the commercialisation of drugs. They can make or break your brand as promoters or detractors without you even knowing it, so my advice to Pharma marketers is ignore them at your peril.
This applies to depression, hypertension, cancer, asthma, or just about any disease there is. The silent voice has real power. How many Pharma marketers actually routinely listen or monitor patients though? Some might do it once a year, but really, my opinion of those nebulous and expensive focus groups favoured by market research companies cannot be printed here. The samples are prone to bias and desperation by the recruiters anxious to fill the slots and anyway, how on earth is 20-30 patients representative of a disease universe? The answer is, it isn't nor is it even directional.
One of the coolest things ever invented surely was the internet. I doubt if Tim Berners-Lee ever imagined the sheer power of information that might even be possible with search engines. Patients blog, they chat in forums, they communicate in multiple ways. All of this activity can be a gold mine if you know where to look and how to influence them. Feedback of course, goes both ways – learn to listen, take your lumps on the chin, improve and make things the best you possibly can given the time and resources you have available. Life is not a game of perfect, it's about doing what matters and caring about the patients.
Take a look at this site, for example. Jerry Mayfield is a quite simply a great guy. A former Louisiana State Trooper, he created a wonderful website in his own time and money after being diagnosed with CML. He regularly added new links to relevant resources and physicians for other fellow sufferers of the disease and a whole cottage industry sprang up around the buzz relating to the Gleevec CML trials way back in 1999-2000. I know, because as one of the marketers, we followed their progress avidly and were humbled, excited and saddened along the way. I am pleased to see that the concept has expanded and now new 'Talks' exist for other new therapies in this area, enabling patients to ask questions, share their experiences and generally provide virtual support for each other.
From a company perspective, the information was incredibly useful as we followed their lives remotely, working on ways to improve things whether it be to push the company to make more drug or speed up the development. The power of a strong patient group can really help your case. They can also tell you about their needs, their goals, their side effects and how well different dosages are working; critical information you could never hope to get in a focus group. It helps you plan ahead, working with key opinion leaders and the medical team to publish papers on practical side effect management, for example. These days, web2.0 and social media monitoring make computerisation and tracking of these sentiments so much easier and quicker compared to 10 years ago and the days of manually reading through hundreds of postings around cyberspace. I ardently wish I had the tools of today available then.
It's been a while since I checked out the patient groups as time and my role has moved on but today I popped back to look at Jerry's site while wondering how how he and several others were doing. After all, before Gleevec, CML patients typically lived 2-4 years and it's now 11 years since the first patient first visit back in 1998. Partly, I was hoping for a minor miracle that perhaps our dream of helping CML patients live to 10 years would be realised. Nervously, I clicked through and found a wonderful posting on the first page of the Gleevec talk posted earlier this month:
and it took 3-4 years and Gleevec at 800mg to get my bcr 0.000 (up/down
a little, last test 0.004). I learned from this site how to be
proactive in your healthcare. If it wasn't for this site I'd probably
be dead by now. I had to tell my doctor when he needed to increase my
dose. He became confident in me because of the knowledge I expressed
about CML and Gleevev. Because it was very rewarding to be able to
learn more about my condition and then work WITH my doctor in my
treatment, I decided to go back to college to be a nurse. I'm 47 yrs
old and in three weeks will be graduating with my Bachelors degree in
Nursing. This is why I haven't had time to really follow the site and
post. It has been very rewarding (and very difficult) and if I would
never have been dx with CML I probably would not have done this. At
times I almost forget that I have CML. The side effects of Gleevec are
just a part of my life now. I just would like to encourage everyone to
not give up your future goals just because you have CML, live it to the
fullest, and DEFINATELY be proactive in your health and healthcare."
Wow. That's far better than I might even have hoped for after meeting the doctors involved in the phase I clinical trial way back in September 1999. This is true patient power and promotion helping educate her own physician become more confident, willingly sharing knowledge with others and getting on with her life despite a life threatening disease. This is stuff dreams are made of. It gives me goose pimples thinking about turning even one cancer into a chronic disease like diabetes.
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The early Gleevec team was relatively small, but close knit one. A bunch of hard working committed individuals dedicated to doing it's best for patients from all areas of the organisation, whether it be R&D, commercial, manufacturing or whatever. Not everything in the drug industry is bad no matter what you read in the papers. It sounds corny except that it's true; a great bunch of people I wouldn't hesitate to work with again and time I saluted and thanked them publicly for all their hard work and effort under tremendous pressure. Whenever the team got stuck on an issue, someone would chime in, "What's the right thing to do for the patients?" and the problem would somehow get solved.
The management was pretty good too – very supportive and encouraging at every step of the way without interfering or micromanaging. You couldn't ask for more. We were also lucky to have some great partners in the agencies and third party companies we worked with. The physicians in the phase I and II trials were some of the best and brightest I've ever worked with, but what made them stand out was they really cared about their patients welfare.
The whole process became like a relay race with the baton being passed around from one team to another as the product moved inexorably towards market approval. For everyone who worked on the STI571/Gleevec development it ceased to become a job per se, instead it became an honour to participate in whatever small way to making a difference to patients lives. The most powerful thing you can listen to is their stories, about their fears, their struggles, their hope and ultimately, overcoming the obstacles. I have yet to hear one that didn't make me cry or be sensitive to the moment.
Real teamwork starts with the right people. Every once in a while we all get a chance to be part of something truly incredible. And it starts with putting the patients first. Do that and the rest will follow.
This post is dedicated to the brave patients who willingly took part in the Gleevec trials, the leukemia physicians who ran them and my team mates who did everything possible to making a real breakthrough in cancer treatment happen. I salute them all.