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The Power of Holistic Thinking
The founders of the patient organization, PatientPower have a simple message for pharma: think holistically.
While pharma sets much store by its interaction with patients, PatientPower, a leader in online, editorially independent communications to patients with chronic conditions and cancer, believes that the industry is way out of touch with patients generally. PatientPower’s Chief Operating Officer Esther Schorr and President Andrew Schorr will be speaking at eyeforpharma’s Barcelona 2015 and, in an interview with eyeforpharma, outlined some of the themes they will be tackling.
“Generally, so much of the communication that pharma does is related to a direct commercial interest,” begins Andrew. “Yet the patient has all sorts of other things that go on in their daily life – such as dealing with friends, or family, worrying about test results, or something related to the medicine they are taking. They have a 360-degree view, particularly with chronic conditions. Unfortunately, pharma doesn’t support that, but they should.”
They don’t know what the various components of the tests mean or how testing of various values might inform the precise drug treatment for them. There is a disconnect in supporting information, education and understanding on these things. Pharma is out of sync and, I believe, to its detriment".
This means there needs to be a shift in mindset. “Pharma needs to begin to think more holistically,” suggests Esther, and companies should perhaps take a leaf out of the Schorrs’ book. Their sites www.patientpower.info and www.patientpower.eu allow cancer patients to share their stories, insights and inspirational tips and also flags up news on cutting-edge research and treatment, helping patients understand what ongoing studies could mean for them or their loved ones. Video interviews with researchers on location at medical conferences, in-person town meetings and online features also offer users the tools and resources they need to better manage their condition and become their own advocate.
The content is also syndicated to other powerful channels including PatientsLikeMe, HealthUnlocked and Oncologytube. The Schorrs want pharma to offer meaningful support for patient programs too, and Andrew suggests that recent examples from PatientPower’s website highlight the difference between what patients want and the information they are habitually receiving in sites provided by pharma. The first is an online video conversation with two highly respected cancer specialists about taking health supplements with cancer medication which proved extremely popular. “It was viewed 800 times overnight,” he points out. “So it’s very much on the minds of patients and family members but it’s not something that is addressed by pharma.” Another piece on understanding lab tests was similarly well received. “This is because diagnostic tests and test results are not explained to patients,” Andrew goes on. “They don’t know what the various components of the tests mean or how testing of various values might inform the precise drug treatment for them. There is a disconnect in supporting information, education and understanding on these things. Pharma is out of sync and, I believe, to its detriment.”
Out of sync
It’s true that pharma has established patient websites – but they are not fulfilling the needs of patients".
”PatientPower attempts to help people make informed decisions about their medical care: and as patients are becoming more sophisticated in learning about their condition, they want consistent, in-depth, credible information and want it as soon as their doctors learn about it. But companies do not tend to see themselves as shareholders in a community with the patient, Andrew says, which means that quite basic data is not shared usefully. “Often, for example, information about clinical trials is not readily available or even understandable for patients,” he continues. One key area where this is particularly true is digital, where PatientPower believes pharma’s processes are largely stuck in the last century. “Pharma is not at all plugged into the digital age,” says Andrew. “Patients globally are increasingly talking online to other patients and across borders: this is outside of the clinic, away from doctors and pharma. It’s true that pharma has established patient websites – but they are not fulfilling the needs of patients.”
Patients want the latest news on their condition, but this is unlikely to be forthcoming on corporate sites which may not be updated with sufficient agility. “It is very difficult for agencies and pharma to adapt fast enough, perhaps for regulatory reasons,” Esther says. “But another area that pharma hasn’t tapped into is patient-patient and caregiver-caregiver conversations on social media. Pharma can listen in and join discussions in an informal way.”This sort of charge is often levelled at pharma, and manufacturers tend to respond by saying their hands are tied due to strict regulatory concerns beyond their control. It is even possible sometimes to detect their reluctance, even fear, when it comes to online engagement for a variety of reasons. Esther has some sympathy with this – and accepts there is something of a balancing act to be negotiated - but stresses that pharma could be making more effort to explore what it could do. “What about explaining more the pros and cons of certain types of treatments or the side effects of medicines? These are very basic things that often don’t get explained in simple terms,” she points out.
Making more of resources
Whatever way you look at it, pharma is not committing as many resources to supporting patients as they should be, PatientPower believes, suggesting that one area that could be addressed is in the use of marketing and communications by third party agencies. “There are some very astute people in that world,” explains Andrew. “Why can’t some of those PR and advertising agencies be directed to support independent activities which amplify what is going on in areas that pharma is interested in?” He cites the publicity generated by agencies for highly successful work carried out by PatientPower in Minneapolis around the breast cancer brand Herceptin and suggests that this would work in other areas. “Funds can be reallocated from putting up yet another patient website that patients won’t use into creating an impact around work in a given community which has been identified by pharma,” he says. “So let’s explore this new model - but my experience is that this leadership has got to come from pharma.”
Targeting efforts is crucial in another key area: despite directives from CEOs that companies should become more patient-centric, this is simply not happening in a meaningful way, PatientPower believes. “You still have silos within companies that don’t talk to one another,” Andrew suggests. “The other problem, particularly in Europe, is that pharma often believes that simply dealing with established patient groups means they have done enough,” he goes on. “So patient engagement people have these relationships – but it really doesn’t go further to that mass of patients who don’t have a relationship themselves with a patient group.”
A ‘can do’ attitude
But if they’ve spent so much on developing a treatment, then why not invest more in their involvement with the community in that therapy area? Pharma needs to play catch-up to be part of the ongoing dialogue".
Pharma likewise needs to be thinking more freely when it comes to how it connects with patients, rather than being bound by rigid ideas of territory, for instance. PatientPower sees Europe as a place where improvements could be made about what initiatives might be supported by pharma. “These decisions get pushed down to a country level,” says Andrew. “But patients are connecting across borders, while pharma programs for patients usually are not.” Even allowing for important differences in culture and language, there are solutions which can transcend this but they are not being explored fully. “What pharma needs is a ‘can do’ attitude,” he enthuses. “They need to be saying that they can support valuable efforts that inform and support the health community generally even though they can’t control them. People with chronic conditions have no experience of being a long-term patient, for instance. So what coaching is available, what support can you get from family and friends – that is the sort of information that pharma can help with.”
He wonders whether firms are brainstorming internally these issues to find solutions – and suspects that they have not, historically, seen this as part of their remit. “Their responsibility, as they see it, has just been to find treatments that work,” suggests Esther. “But if they’ve spent so much on developing a treatment, then why not invest more in their involvement with the community in that therapy area? Pharma needs to play catch-up to be part of the ongoing dialogue.” However, the important thing is that there is time to do this, she thinks. “It is a marathon, not a sprint.”
Looking to the future
PatientPower believes patients and their family and friend “care partners” can also play a role which will be both for their own benefit - and for pharma’s too. “We need truly patient-centric communication and care,” says Esther. “Sometimes patients and caregivers just want to hear things in plain English. All parties need to take a more holistic view: whether it comes to decisions about participating in a clinical trial, or starting or staying on a treatment, it’s not just the patient who is involved, it is usually a wider family group. Pharma needs to support that too.” PatientPower believes it needs pharma to recognize the sort of enhanced and ongoing support they could be providing. “When there are diagnoses of juvenile diabetes or of Alzheimer’s there is an understanding from pharma of the need to support the family,” concludes Andrew. “But we’re saying that it’s just as important to do that for all the conditions in between and do it, in this digital age, wherever a patient or family member may be found.”
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