The benefits of collaborating with patients and physicians
Joan DeCelie-Germana, director of the CF Center at Schneider Childrens Hospital, on how pharma companies can help physicians connect with patients
Cystic fibrosis (CF) is a multi-organ disease that requires professional collaboration at all levels.
CF specialists must work side by side with neonatal care, nurses, pulmonologists, gastroenterologists, endocrinologists, and more.
But Joan DeCelie-Germana, director of the CF Center at Schneider Childrens Hospital in Great Neck, New York, says that one team in her hospital trumps all others: the physician-patient team.
I like to tell my patients that everyone on a team has a role, DeCelie-Germana says.
Im going to try to be the best doctor I can and prescribe the right things and teach you about the disease, and youre going to try to learn about your body and how youre feeling and come in and be honest and tell me what youre experiencing.
It would be easy for DeCelie-Germana to take a less personal approach.
In her 20 years in the CF field, shes served as the director of three CF centers, lectured on CF around the country, and currently teaches as the assistant clinical professor of pediatrics at Albert Einstein College of Medicine in the Bronx.
She insists, however, that one of the most critical tools to setting kids on a successful path is establishing a collaborative relationship that acknowledges each and every patient as an individual.
If you don't figure out what makes each individual tick, you cant help them navigate the disease as effectively, she says.
Pharma companies can play a critical role in helping physicians accomplish this.
Keys to a healthy relationship
From the doctors perspective, there are several keys to ensuring successful patient-physician collaboration.
The first is to know your audience.
Kids, for instance, are play- and goal-oriented.
Its therefore important for physicians to keep sessions quick and fun, to translate complicated information into simple explanations, and to be sure to offer plenty of positive reinforcement.
Its critical that they dont view the CF center as a place of negativity, DeCelie-Germana says.
They should walk in the door and feel warmth and comfort and love and acceptance. That message and energy should be conveyed from the minute they walk in, so everyone in the centersecretaries, nutritionists, doctors, nurses, receptionistshas to be on that wavelength.
Even with adults, projecting the same vibe of warmth and care is important.
We forget that because youre an adult, it doesnt make it easier to hear information, especially as it pertains to yourself, DeCelie-Germana says.
Another way physicians can foster healthy collaboration is to open up beyond the five or ten minutes each appointment lasts.
DeCelie-Germana communicates with her patients via text, email, and Facebook.
The last of these mediums has proven particularly powerful in making her presence felt in patients lives.
Sometimes exchanges can be purely socialDeCelie-Germana recently ran a triathlon and received a flood of support from her patientsbut theres substantive interaction as well.
It may start off cutesy, but it quickly becomes a way of reaching me and not feeling alone, DeCelie-Germana says.
As the administrative barriers separating patients from physicians become ever thornier, the parents and support networks surrounding patients also appreciate DeCelie-Germanas accessibility.
When I tell parents that I will always answer you barring unforeseen circumstances, theyre like, Wow, I cant believe I can have access to you like that, says DeCelie-Germana.
It gives them comfort knowing that theres somebody nearby whos going to help them with their child because theyre so terrified of the illness.
Despite its many positive impacts, patient-physician collaboration is becoming increasingly difficult for physicians to provide.
Payers have reduced the amount of reimbursement physicians receive for patients, forcing physicians to see more patients in less time to cover the overhead of a practice.
Administrative burden is another threat, as paperwork on average now takes an hour of administrative time for every two hours of patient time.
DeCelie-Germana reports that at the CF Center, shes inundated with paperwork.
The amount of administrative work required by the CF foundation is voluminous, and that pales in comparison to the volume of work required on the insurance end, DeCelie-Germana says.
To secure one medication for a CF patient requires prior authorization from the insurance company, which means DeCelie-Germana spends four hours for every single medicine for every single patient.
Its brutal, she confesses, and can be rather overwhelming.
The pharma opportunity
Pharma companies canand shouldhelp.
The healthier the relationship between patient and physician, statistics show, the more healthy and adherent the patient.
One solution is for pharma to make sales pitches less intrusive.
Reach out to doctors through eDetailing, create websites for physicians to learn more about products on their own time, and supplement short presentations with apps that doctors can download and pass on to patients.
DeCelie-Germana says that pharma companies can also step up to the plate for patients themselves.
While regulations limiting pharma-patient interaction have become more restrictive, pharma companies can design patient-facing websites that serve an educational purpose while also providing a way for patients to reach out.
A website where patients can go to send ideas to pharmaceutical companies, especially regarding drug development, development of machinery, and durable medical equipment, would be a huge benefit, DeCelie-Germana says.
Facebook could provide patients with a similar outlet.
DeCelie-Germana understands why pharma companies have been reluctant to wade into the social media mania, but points out that Facebook is for the most part a very friendly place, and associating with that positive ethos would be a good move for pharma.
Its almost mandatory for pharmaceutical companies to embrace social media, she says.
They have to figure out how to get around these legal, problematic issues.
Finally, DeCelie-Germana wonders if pharma companies could implement patient advisory boards that provide insight into patient needs and a conduit for patients to voice concerns.
For instance, a typical grievance from the CF community is that parents have to fill out a separate form for every co-pay.
Creating a central site where parents could fill out one form for all co-pays would thus make the patient community happier and would give those on the professional side more time to devote to positive outcomes.
Thats the sort of insight that comes from collaborating with parents and patients, DeCelie-Germana says.
If you dont involve them in any of the collaboration, youre going to miss out.
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