“…whilst education is the key to better healthcare it is the education we receive in school that needs improving.”
Healthcare information and education, it seems, isn’t being delivered to the standard that patients expectfrom some healthcare providers. Whilst some could argue that the fault here lies with the HCP, othersthink that most patients are insufficiently educated when it comes to basic biology and this makes lifehard for the HCP to fully explain health problems in the limited time they have available. Elaine Schattner,(physician, blogger and patient), explained, “
I live in one of the most educated communities in the world and many adults there don’t know what an antibody is…
”Elaine believes that whilst education is the key to better healthcare, it is the education that we receive inschool that needs improving. Improved science education at schools, she thinks, will lead to us beingable to make better informed decisions as patients.Tamara Sancy, SLE patient from Chile, reinforced this idea by suggesting that patients don’t want toexpose their ignorance and this prevents them from finding out vital information about their conditionand treatment: “
I think patients are constantly afraid of asking questions. They are afraid of asking silly things and choose to stay silent.
” The answer here could lie in better education both inside and out of thedoctor’s surgery but it could also lie in healthcare providers encouraging patients to ask questions andopen up.In addition to these education issues there is the separate case of rare diseases, where doctors simplydon’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficientresearch into the disease. As rare disease patient, Marianne Vennitti, explained “
rare disease patients arein desperate need for information about the diseases that invade their bodies, their lives and their family’slives.
” She adds, “
I have seen the look in the eyes of many doctors that say, I just don’t know because youare so rare and there are no approved treatments.
“The responses we get to this question always suggest that pharma is closed off and hidden away from view.”
What do patients want from pharma?
Throughout these interviews we’ve asked many patients what they would like to see from pharma. ‘Moreopenness’ is a suggestion that comes up time and time again. Marianne Vennitti explained, “…
pharmaneeds to come out of the woodwork, so we can see who they are and what they’re doing
”. This was echoedby Kelly Young when she said, “…
I’d like to see more openness from pharma and to see the wall between patients and industry brought down or at least have more windows.
” Amy Tenderich shared this opinion and thought that pharma have a lot of work to do in this area: “
I feel like the industry spent decades essentially ignoring patients, so it has a lot of catching up to do
.” The workthat pharma has ahead of them to change mindsets regarding their willingness to be open with patientswas clear in our interview with Kathi Apostolidis, who said “
I do not believe that pharma is actually ready and willing to engage with patients and patient organisations
”.The responses we get to this question always suggest that pharma is closed off and hidden away fromview. Meredith Gould suggested this partition could be brought down by inviting patients to share their knowledge:- “
I’d like to see the pharma industry invite patients to professional conferences to share what weknow and help broadcast information…
What can we learn from these patients?
The messages are clear, patients want more from their healthcare providers in terms of education andinformation, presented in a way that they can understand. With regards to pharma they are keen for openness and inclusion. I’m sure we will continue to see a growing trend in patients going online for support and information but it would be nice to see healthcare providers and pharma become part of thatand engaging with them online to deliver the information that they seek.On a closing note, here’s some advice that Tarama Sancy offered to other patients similar to her: “