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http://www.pharmapho rum.co m/2013/02/08/patient-perspective-interview-series-o verview/

Patient perspective interview series: overview

Patient perspective interview series: overview
Post ed 8t h February 2013 in Art icles | Add a comment
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 dif f erent patients on their experiences with the healthcare industry and on what they would like f rom pharma, many common themes recur. T his 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 f rom using social media as a patient. Sharing and f inding a community seemed the most common reasons cited. The greatest benefit Ive discovered using social media as a patient has truly been finding a community, explained Tif f any Peterson. Kerri Morrone Sparling also shared this view when she commented that she felt alone with diabetes until she started blogging. many patients go online to seek information, but also to share and be part of a community. Whilst many patients have turned to social media and online platf orms to gain knowledge, many f ound the lack of available inf ormation f rustrating at their time of diagnosis and this has driven them to set up their own blog and online inf ormation 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 inf ormation, 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 lets take a look at what these patients suggested needs to happen in order to make the patient experience a more positive one. Tif f any Peterson said it was a really frustrating time for me because I expected more from my healthcare provider. Tif f any wasnt the only unsatisf ied patient who f elt her needs hadnt 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 thats very easy to understand and practical.

whilst education is the key to better healthcare it is the education we receive in school that needs improving. Healthcare inf ormation and education, it seems, isnt being delivered to the standard that patients expect f rom some healthcare providers. Whilst some could argue that the f ault here lies with the HCP, others think that most patients are insuf f iciently educated when it comes to basic biology and this makes lif e hard f or the HCP to f ully 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 dont 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 inf ormed decisions as patients. Tamara Sancy, SLE patient f rom Chile, reinf orced this idea by suggesting that patients dont want to expose their ignorance and this prevents them f rom f inding out vital inf ormation 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. T he answer here could lie in better education both inside and out of the doctors 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 dont have the answers to patients questions due to low patient numbers and, consequently, insuf f icient 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 familys lives. She adds, I have seen the look in the eyes of many doctors that say, I just dont know because you are 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? T hroughout these interviews weve asked many patients what they would like to see f rom 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 theyre doing. T his was echoed by Kelly Young when she said, Id 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. T he 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. T he responses we get to this question always suggest that pharma is closed of f and hidden away f rom view. Meredith Gould suggested this partition could be brought down by inviting patients to share their knowledge:- Id 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? T he messages are clear, patients want more f rom their healthcare providers in terms of education and inf ormation, presented in a way that they can understand. With regards to pharma they are keen f or openness and inclusion. Im sure we will continue to see a growing trend in patients going online f or support and inf ormation but it would be nice to see healthcare providers and pharma become part of that and engaging with them online to deliver the inf ormation that they seek. On a closing note, heres some advice that Tarama Sancy of f ered to other patients similar to her: a

chronic illness is not the end of your life, its the beginning of a new life that can be even more satisfactory than your former life. To view the f ull interviews click on the links below:Tamara Sancy Marianne Vennitti T iffany Peterson Elaine Schattner Elena Sainz Regina Holliday Kerri Morrone Sparling Pat McBride Dr Meredith Gould Amy Tenderich Lisa Emrich Manny Hernandez Jody Schoger Kelly Young Kathi Apostolidis

About the author: Rebecca Aris is Managing Editor of pharmaphorum, a f ast growing online thought leadership channel f or pharma, representing an audience of senior pharma execs f rom all over the world. Rebecca was the f irst f ull time employee to join pharmaphorum, starting in her current role in mid-2010, and is responsible f or 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?