Philadelphia, here I come …

I’m flying (!! flying!! Ack!!) to Philadelphia tomorrow to participate in Healthline’s Thought Leadership ePatient event, which takes place on Thursday. It brings a few patients, like me, and the people who create pharmaceutical advertising together to meet and talk about what’s working–and what’s not in their efforts to make us comfortable with their products. I’ll be one of a panel of four patients. My specialty is, of course, rheumatoid disease.

PhillyMontage

The idea, as I understand it, is to help pharmaceutical advertisers understand the “patient’s journey” and patient’s needs, taking into consideration what types of technology we use–TV, Internet, tablets, apps, and through which media (blogs, pharma websites, health websites like Healthline)–and how they can reach us more effectively.

I’m looking forward to the event. I think it’ll be really interesting–and educational–on both sides of the room. And Healthline, too.

And, since I’m just one little patient with one little blog, I thought I’d toss some questions out to you, too. They’re pretty much the same one Healthline asked me as we were preparing for the event. I’d love to hear your answers, and I’d really like to share them with the pharma group on Thursday. You can either pipe up here in comments or email me: bluewren56@gmail.com

The questions:

1. What suggestions might you make to pharmaceutical marketers/advertisers who market autoimmune arthritis drugs? How could they do it better?

2. Have you ever visited drug brand websites to get information? If so, when? During what part of your journey? During Symptoms, Diagnosis, Treatment research?

3. Do you use social media for health information or management support? If so, when and how?

4. Do you feel there is a gap between patients and doctors? Can pharmaceutical marketers help bridge that gap or would you rather get information from a third party, such as Healthline, so you can make more informed treatment decisions?

Thanks, everyone. I think this is going to be a blast. I’ve never been to Philadelphia before, and I may have some free time on Wednesday to do a little sightseeing. I’m bringing my camera so I can do some touristy things. And of course, I’ve gotta try a beer and a cheesesteak.

And while I’m a bit nervous about public speaking–each patient has to give a 10-minute introductory talk about their illness “journey”–I’ve done it before.  I’ll just have keep a bottle of water handy for afterwards, because I always seem to have a ferocious dry-throat-tickle-coughing attack directly after I sit down. Nerves, I think.

Wish me luck! And please do tackle some of those questions, if you would. I’d like to know what you think.

 

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10 responses to “Philadelphia, here I come …

  1. Wow! Congratulations. Have a wonderful trip. Take lots of good books! They couldn’t have asked a better representative. I thought I’d chime in on your questions here:

    1. Suggestions to marketers of autoimmune drugs to be better?
    My main suggestion is to quit showing everyone healthy and active without any visible signs of disease. That’s not the truth and taking their drug won’t reverse joint damage.
    2. Visits to drug websites?
    I always visit drug websites when I’m considering options for treatment so I can talk intelligently to my doctor and be prepared to ask questions about side effects, dosing options, etc. I occasionally visit during treatment, particularly if I’m experiencing something that might be a side effect.
    3. Social media usage?
    I generally follow blogs from other RA patients. I’m not much of a social media person otherwise in terms of health information.
    4. Do you feel there is a gap between patients and doctors and can the drug companies help?
    If there is a gap between a patient and a doctor, the patient should get a new doctor (IMHO). I think the best way drug companies can serve the doctor/patient relationship is to make information readily available to both.

    Hope this helps. Looking forward to the post-trip debrief to hear all about your adventures!

  2. Thanks so much, Carla! This really should be so much fun. I never get to travel anywhere–the last time I did was to New Mexico about four years ago to visit my sister. Maybe this the the start of a new phase? Next up: Paris! :D And thanks for your input for the event. I’m taking it with me.

  3. That sounds like a great learning experience Wren. All the best.

    For the first question I agree with Carla. No one in most chronic disease commercials looks at all like they have ever been sick. Grey hair seems to designate a serious issue, but not a crooked joint or bit of swelling to be seen

    2.I’ve looked at drug websites for drug info sometimes before I take a drug. I want to know the usual dosage and the mechanism of action. I am disappointed if I can’t get technical info from the source. I have been on some drug sites by accident. They are all wrapped up as “help” sites but when you dig deeper they are not even handed about medical treatments, just practical tips sometimes

    3. I use social media to help me to gain health literacy, stay up to date with treatments, find other people with my aims and ambitions for health and to give and receive support. It’s an every day thing. I blog and am active on Twitter

    4. Just to be funny, yes, there is a gap when the drug rep gets in to see the doctor before I do. But more seriously I feel that there is an information imbalance, and a very real difference in the way Drs feel about the value of patients time vs their own.
    Drug companies can help with information but I don’t see how it can not be coloured by their bottom line.
    They can do more good by sponsoring disease awareness and patient groups without linking it to a drug. And by not dropping the project or group if the drug they are trying to promote goes off patent. This leaves some good projects in the lurch and the company name is not remembered with fondness

  4. Welcome to Philly Wren. I hope you get a chance to see some of the city. I wish the weather was going to be a little nicer for you. I think they made a wonderful choice sending you.

    Questions
    1. I agree with Carla. A true depiction of the illness would be nice.
    2. I generally check out drug web sites if I plan on switching meds. I may also visit the site if I am taking a med and want to check side effects or drug interactions.
    3. Social Media. When first diagnosed and for many years after I knew no one with ra. Social media has helped me connect with folks who are working through similar challenges.
    4. I don’t find this. I have been very fortunate with the doctors I have had.

    Hope that helps. If you are an interested in museums I can’t recommend the Barnes museum enough. Of course the history of the city and its buildings are a big draw. Safe travels.

  5. In the airport now on my way to Philly! I agree with the other comments.
    Have fun!

  6. I can’t really comment on the brands etc. because it doesn’t work like that here across the pond, but have a wonderful time in Philadelphia and do let us all know how it goes!

  7. Eileen Harrison

    I use social media a lot – in an expert patient role. In the UK we have three different forums for PMR/GCA. The first was part of a site set up by doctors for other doctors and patients originally and there are literally hundreds of different forums on it, we are just one. It was the venue for 5 ladies to meet 7 or 8 years ago and between them they set up the first PMR/GCA charity and then the national version. Both have associated websites and forums. They are all different in how they work really but they form a lifeline for many people who can’t get to a real support group. We are fighting a battle for doctors to even hear of our disease and pharmaceutical companies aren’t interested – not enough of us and we are mostly over 50 and anyway, pred works. Full stop! But I think social media is an essential nowadays for people who live in remote areas who have a chronic disease – whether it is PMR or RA – to get info on how to cope from the people who have already been there. If you live somewhere where there isn’t much of a support structure it can be a life-saver. And it can help identify the useless doctors who don’t know what they are talking about, because as Carla says – then you need a new one! My experiences this week alone range from GPs who tell patients it’ll all be over and burnt out in a few months to “I can’t do anything more, you’ve had 3 weeks of pred”!
    Like Polly – can’t comment on the drugs side, as it works very differently over here.
    But have a wonderful time. I haven’t been there – OH has as he has a colleague there and they did some experiments together. I like meetings…

    Eileen

  8. I agree with many here. It makes me truly angry when they portray their drug as making every one look “fine” and “healthy”. We fight this image SO much (“But you don’t look sick!”) without them encouraging that thought process. I have had people say “Have you seen the ad for X? If you would just take that you would be back to normal!” Nothing irritates me more!

    I stay off their websites because I have found they are so slanted that I doubt their information. It’s a bias issue.

    I use social media a lot for info about my illnesses. It’s wonderful because that’s how I have connected with terrific people like YOU!

    There is a doctor/patient gap. They are so hurried that I feel like they sometimes see a chart, not a person. And I love my current doctors! I just feel sometimes like they zone in on one thing (current complaint?) and are less proactive toward the overall picture. Someone to manage the big picture would be so very incredibly helpful. Someone who could tell me how, for example, my RLD can affect my Fibro, would be helpful.

    Thanks for doing this for all of us Wren! They couldn’t have chosen a better voice. Fly safe and enjoy Philly!

  9. Wren, so glad you’re doing this. I hope you can manage the stress of travel with RA. In terms of question 1, I wish that pharma companies would not paint such a rosy picture of people with RA.

  10. Hope you had a wonderful experience with this trip. It’s so lovely to be recognized for the work you do and life you live. Here’s to your continued success and to conquering the Dragon 🐉 in your life.