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Survey results for the community
 

Survey results for the community

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  • Why doesn't the individual with the example regime do their nebs at the same time that they do the vest? It would cut treatment time in 1/2. Where is the physical exercise as well?
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  • It quickly became an e-Patient community and has been called a “hub of information, with 11,000 members, 20,000 unique visitors a month, hospital and pharma websites link to it throughout the world.E-patients…as defined by Dr. tom Ferguson are the on line patients themselves, family members and care givers.The conversations have been on going for 15 years with a database of over 50,000 topics and 2 million messages.It is indeed global and patient centered.
  • People with cystic fibrosis are quarantined from each other due to the fear of cross infections so being online is a safe environment especially for this community.Members read what hundreds of people have written looking to understand and exchange ideas and perspectives.Ideas spread out organically…sparking off each other.Everyone can be contributors as students and teachers .
  • This community responds with enthusiasm to research.In preparing for this talk, I sent out a 50 question survey on adherence, giving the community an opportunity to be heard at this Patient Adherence and Engagement Summit
  • Over 600 completed this survey in less than a weekThey want to be heard, some with very strong opinions, lots of first hand knowledge…. They came from all over the world 124 countries and territories.There is always an international conversation about treatment regimens.
  • Most came from the USA.
  • The first question asks:Is your treatment regimen automatic? Like brushing your teeth? 75% agreedLet’s take a look at a day in the life of one of our members…LouLou a 31 year old female married with a child who also has CF.The following slide set was designed by my Linked In friend Rajiv Mehta who presented LouLou’s day at a Mobile health conference in San Diego
  • Back to the surveyWhen I do not adhere, it is because50% said they choose to skipWhile 30% said they forget.20% always adhere.One patient tells us…When I do skip any treatments its usually because I’m so tired…a lot of time sleep wins out!
  • But with CF they are always weighing the choices.Should I take the med 2 times a day instead of 3? I may be working, in school, or I don’t want to reveal my problem/disease to the people around me.Time is a factor and money could be a factor too. But in our survey most disagree…60% DO take the med as prescribed.One patient tells us:I take all my meds but do question the doctor and negotiate over treatments.
  • Not surprising, affording medical costs is a concern. 68% agree with this one. Those disagreeing were not from the US!The total price for one CF patient for one year can run in the 6 or 7 figures depending on if they have a lung transplant, or how often they are hospitalized. One patient, told us it was over a million dollars in hospital stays for her 6 year old daughter last year.
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  • But they have plenty of help from family and friends.79% get help sometimes or always.That’s why it’s a good idea to include family and friends with easy to understand educational tools when you are marketing to a chronic disease community.
  • 49% would like some type of mobile device to remind them to take their meds.Over the past 15 yrs my interactions with this CF community on the web, in hospitals and at their homes, I have learned a lot about why adherence can be difficult.For example travel time to and from their centers can be significant . This combined with all their co morbidities, cross infection risks, and the treatment regimen schedule makes this community a “perfect storm” for Mobile Health.
  • This community takes terrible risks everytime they come together. LouLou told me she noticed noone had cleaned the room between patients on her last doctor visit.In a recent poll 66% said their current doctor/center is not vigilant aboutKeeping them informed as to how contagious the bacteria is between CF patients (including siblings)?
  • So it isn’t surprising that 70% would agree to participate remotely with their doctor for monitoring various aspects of their health: PFT’s, glucose, heart rate for example through mobile apps like the smart phone, iPad, computer etc.
  • However only 14% would agree to pay for this.In a recent poll on our site, we found 46% of them own smart phones.In another poll, we askedDoes your doctor have a smart phone?58% said they don’t know.If they are going to collaborate or partner with their doctors in the future, it’s good for them to be aware of communication possibilities.Respondants…thanked us for questions like this Commenting:Well laid out survey…covering a lot of diverse areas…thank you for asking the questions regarding internet information and cf clinic support.
  • 67% know where to find “easy to understand” information on all the drugs they are taking.Doctors admit that this web savvy patients “know more than the interns”. It is common for the members at CysticFibrosis.com to make jokes about health care professionals obviously not in the CF field who ask”So Cystic Fibrosis “when did you get this or How long have you had it?
  • Most do use their pharmacists to answer questions.
  • 61% agree they ask their doctor about a trial after hearing about it on lineIt is common in the CF category where there are lots of trials going on, to treat trial participants as heroes. We hear this all the time!
  • A popular item on our survey is the remote clinical trial…68% found that desirable.This would mean that patients who want to participate in clinical trials might not have to travel as many times or as far.Craig Lipset from Pfizer told me this in a recent conversation:The patients would also be included in the development of trials.As a point of interest…remember LouLou…she is participating in a clinical trial here in Philly, but she lives in connecticut, she drives one hour to the train which then takes three hours to get to Philly. She participates in the trial and then reverses the trip all on the same day. She loves the drug she is testing, because she was on it in a previous phase and it worked miracles, now she knows she is on the placebo, but she thinks this is a miracle drug for her and her son.
  • 55% find support about the drugs they take through an online community site like ours.
  • Only 20% agree their doctor encourages them to look on line for information.We often hear that doctors tell their patients not to look on line.This has become a target area for my company medrise.com to help engage doctors and patients in adherence and engagement conversations by using our collection of legacy websites like dermatologist.com that give dermatologists their their own electronic business cards.
  • On the other hand, 52% agreed their doctors don’t mind receiving information from the web.One commenter said:Since the start of internet/forums people with Cystic Fibrosis, especially myself have become far more empowered. After years of asking and having to seek funding I have eventually secured The Vest. I. now also ask about up-to-date neb machines, but still have this battle on my hands to get the best. My team is not happy that I ask so many questions, and they have referred to me as "Dr Smith"!! 
  • It was pretty much even whether they thought their doctors would think less of them, if they don’t adhere to their orders but in a recent poll we found 63% have stopped a prescribed medication without telling their doctor or against their doctor’s recommendation.
  • 55% think going on the web is a necessary way to clear up any questions they have about a med.One member comments:I heavily rely on medical websites for information. His examples include : pubmed.com. Clinicaltrials.gov and medicalnewstoday.com
  • 72 % ask their doctor about a new drug if they hear about it on our site or elsewhere on the web.
  • These patients are so motivated to feel better, that they don’t necessarily wait to see what other patients think of the med before trying it. They can’t wait to share their experiences with the community and many are very eager to hear about the latest trials and new drugs.
  • Getting the vocabulary and having the confidence to ask questions is obvious at a site like ours where 60% agree they have learned to ask more questions.
  • 21% of our members have gone to manufacturer’s websites to get help paying for their health care needs, but 79% have never done that or even thought of it.This is yet another way members are always helping each other, finding ways to pay for their treatments, through insurance companies, best places to live, how to save money in every day life, and encouraging each other to use the access solutions and co pay cards offered by the different pharma companies.
  • We can see from this slideOne third of the participants do not trust the information coming from your companies.That’s pretty important don’t you think?Let me give you a homework assignment:Build trust with your patients. Here are three suggestions:1. Encourage and Allow real human interaction with your company. (Remember Steve Keilesat Ambry Genetics?)2. Help the doctors and patients create tools , widgets, apps and games which educate them about their disease and your products. 3. Sponsor Mobile Health efforts for communities like this one.Because without trust there will be no engagement.
  • LouLou has a full day made up in a good part with just taking care of her treatment regimen. From all the different medications she takes and the delivery systems, taking care of the nebs and eating more than a normal person because she has to keep her weight up along with taking care of her little boy with CF.I don’t know about you, but I think LouLou’s day is breathtaking…and for LouLou it’s all about being able to breathe.
  • And you know my homework. I am looking for founding sponsors to support my efforts to continue to develop and build referral networks and patient engagement tools that maximize the value of my list of niche medical domain names.We work intimately with industry leaders such as yourselves to give specialty healthcare professionals the right tools to grow their practices, engage patients, and improve health in as much time as it takes to create a facebook profile.
  • Thank you Community of CysticFibrosis.com who bringEducation, support and hope to the world and eye for pharma for hosting this great patient adherence and engagement summit.

Survey results for the community Survey results for the community Presentation Transcript

  • CysticFibrosis.com
    • 11,000 members,
    • 20,000 unique visitors a month,
    • 15 years with a database of over 50,000 topics and 2 million messages.
    • It is indeed global and patient centered.
  • Conversations on
    CysticFibrosis.com are:
    Synaptic
    Organic
    Global
  • CysticFibrosis.com Survey on Adherence October 2010
  • Global Response600 + completed
  • Countries
  • Is your treatment regimen automatic?Like brushing your teeth?
  • When I do not adhere, it is because:
  • The Prescription is too time consuming (e.g. If it prescribed three times a day, I’ll take it twice a day.)
  • Affording my medical costs is a concern for me.
    68% agree
    18% disagree
  • Support of Family and Friends
  • I get help with my regimen from my friends, partners, family members.
  • I have/would like to have a mobile app to remind me to take my meds.
  • Mobile is a great way to keep out of harm’s way!
  • I would agree to participate with my doctor for monitoring various aspects of my health: PFT’s, glucose, heart rate for example through mobile apps like the phone, iPad, computer etc.
  • I would be willing to pay for this app or service.
  • I know where to find “easy to understand” information about every drug I am taking.
  • I ask my pharmacist if I have a question about a drug.
  • I have asked my doctor about a clinical trial after hearing about it on line.
  • I find support about the drugs I take through an online community site like CysticFibrosis.com
  • My doctor encourages me to look online for information.
  • My doctor does not mind receiving information I bring from an on line community.
  • I believe my doctor will think less of me if I don’t adhere to their advice.
  • Going online is a necessary way to clear up any questions I may have about medications
  • When I hear about a new med at CysticFibrosis.com or elsewhere on the web, I ask my doctor about the drug.
  • I wait to see what other patients think of a medicine before I try it.
  • I have learned to ask more questions of my care team, because of CysticFibrosis.com and other online CF communities.
  • I have gone to manufacturer’s websites to get help paying for my health care needs.
  • I would trust drug companies to tell me truthfully about the benefits and risks of using their drugs
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  • Thank Youeyeforpharma!