Patient perspective interview series: overview
Rebecca Aris
pharmaphorum
Over the past year we have interviewed several vocal e-patients, asking them to share their patient experiences with us. This article summarises these patient interviews and highlights some common themes.
Having spoken with many different patients on their experiences with the healthcare industry and on what they would like from pharma, many common themes recur. This article shares some of the recurring ideas and highlights the overall messages that patients would like to deliver back to pharma.
What does social media offer patients?
We asked all of our patients what it was they gained from using social media as a patient. ‘Sharing’ and ‘finding a community’ seemed the most common reasons cited. “The greatest benefit I’ve discovered using social media as a patient has truly been finding a community”, explained Tiffany Peterson. Kerri Morrone Sparling also shared this view when she commented that she "felt alone with diabetes” until she started blogging.
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"...many patients go online to seek information, but also to share and be part of a community."
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Whilst many patients have turned to social media and online platforms to gain knowledge, many found the lack of available information frustrating at their time of diagnosis and this has driven them to set up their own blog and online information resource. “Early on I realised it was important to share what I discovered and learned with other people…” explained Meredith Gould. Kelly Young spoke of her drive to set up her blog: “I had a goal to put together a website for patients where they could communicate with each other and encourage each other, but also where we could put good information.”
It seems many patients go online to seek information, but also to share and be part of a community. In addition, there are many patients who want to give back to other patients to make their experience a better one.
How can the patient experience be improved?
It seems that a lot needs to change to improve the patient experience, and achieving this will be no easy task, but let’s take a look at what these patients suggested needs to happen in order to make the patient experience a more positive one.
Tiffany Peterson said “it was a really frustrating time for me because I expected more from my healthcare provider…”. Tiffany wasn’t the only unsatisfied patient who felt her needs hadn’t been met. But how can the increasingly demanding needs of patients be met at a time of cost containment?
Another recurring theme that appeared when discussing patients’ needs was education. As Meredith Gould explained, “the main challenge for providers in the industry is providing education and information that’s very easy to understand and practical.”
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"...whilst education is the key to better healthcare it is the education we receive in school that needs improving."
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Healthcare information and education, it seems, isn’t being delivered to the standard that patients expect from some healthcare providers. Whilst some could argue that the fault here lies with the HCP, others think that most patients are insufficiently educated when it comes to basic biology and this makes life hard 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 in school that needs improving. Improved science education at schools, she thinks, will lead to us being able to make better informed decisions as patients.
Tamara Sancy, SLE patient from Chile, reinforced this idea by suggesting that patients don’t want to expose their ignorance and this prevents them from finding out vital information about their condition and 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 the doctor’s surgery but it could also lie in healthcare providers encouraging patients to ask questions and open up.
In addition to these education issues there is the separate case of rare diseases, where doctors simply don’t have the answers to patients’ questions due to low patient numbers and, consequently, insufficient research into the disease. As rare disease patient, Marianne Vennitti, explained “rare disease patients are in desperate need for information about the diseases that invade their bodies, their lives and their family’s lives.” She adds, “I have seen the look in the eyes of many doctors that say, I just don’t know because you are so rare and there are no approved treatments.”
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"The responses we get to this question always suggest that pharma is closed off and hidden away from view."
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What do patients want from pharma?
Throughout these interviews we’ve asked many patients what they would like to see from pharma. ‘More openness’ is a suggestion that comes up time and time again. Marianne Vennitti explained, “…pharma needs to come out of the woodwork, so we can see who they are and what they’re doing”. This was echoed by 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 work that pharma has ahead of them to change mindsets regarding their willingness to be open with patients was 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 from view. 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 we know 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 and information, 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 that and 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: “a chronic illness is not the end of your life, it’s the beginning of a new life that can be even more satisfactory than your former life.”
To view the full interviews click on the links below:-
About the author:
Rebecca Aris is Managing Editor of pharmaphorum, a fast growing online thought leadership channel for pharma, representing an audience of senior pharma execs from all over the world.
Rebecca was the first full time employee to join pharmaphorum, starting in her current role in mid-2010, and is responsible for coordinating all editorial content on the site.
Prior to working at pharmaphorum she was a medical writer at a healthcare PR agency.
In addition, she spent three years working as a commissioning editor on three journal titles at a biomedical publishing company. Rebecca holds a BSc (Hons) in pharmaceutical science.
For queries she can be reached through the site contact form or via Twitter @Rebecca_Aris.
What can pharma learn from patients?
