While at BlogHer 09, I had the wonderful experience to moderate the “Healthcare by Committee” panel on Saturday July 25, 2009. All the events were “Live Blogged”. I’ll share my insights on the session later this week but let me share with you the transcript of the session to catch you up on the amazing conversation we had with the participants:
More than ever parents are turning to the Internet to help take care of their family and there are a wealth of resources out there, including medblogs. How can we all do a better job of assessing the credibility and usability of the medical information we find online?
Caryn Dubelko, Community Director at iVillage, Dr. Gwenn O’Keeffe, a pediatrics physician who helps families find reliable information online, Kim McAllister, a registered nurse who has worked in emergency rooms for nearly twenty years and Dr. Jennifer Shu, a pediatrician and author focused on helping families establish and maintain healthy living habits, will help demystify when to seek a professional diagnosis and whether we can simply self-diagnose our ailments. Join the conversation with your questions and stories about Google-nosing: What worked and what sent you into a bout of paranoia?
Dr. Gwenn is the moderator, introduces the panel and thanks J&J for sponsoring the panel.
Gwenn asks who has recently searched on line for health related issues, and how many found it frustrating?
Many people raise their hands. It is like trying to find a treasure chest of gold only to find rocks. They are going to try to piece together the information that we find on the internet.
Kim: She had uterine cancer for a week, she started searching symptoms on the web and was for sure that is what she had. She went to the big sites, and they were feeding into the decision she had that diagnosis. She is a nurse, and still did this. The more she searched, the more interesting the information became. There has to be some guidelines to use and search. She did not have cancer and find out after a biopsy seven days later.
Gwenn: Jen, how do you figure out which site to turn to?
Jen: Big sites are good to go to, like the government sites, hospitals. That is a great first step. The second step is to ask your doctor which sites to go to like Mayo Clinic, etc. Go to specific sites related to your diagnosis, like American Diabetes. Go to message boards on those sites to make connections. They are going to give you other information that is not necessarily medical stuff, like when you can exercise after a C-section.
Caryn: She thinks that you need to realize that dealing with a health issue, you have fear and you need to step back while you are searching and not let yourself panic. Do the research on your sources like who is behind the site.
Gwenn: A lot of people turn to online, and there is a code of healthcare ethics for medical blogs. They go the extra mile and there is a label on the sites that say they follow the ethics they have set out. This should be able to sort out health information versus an opinion. The source can still not be credible, look for doctors licensing.
Any issues we would like to talk about?
Katrina: Her son was diagnosed with autism, and things are constantly changing and evolving. There are debatable things like vaccinations, and there are so many different opinions. She feels like she has to stay on top of things, and she doesn’t feel like the medical field isn’t moving fast enough. The challenges are caring for a special needs and where is the balance while waiting for information or products that help her autistic child. She goes to blogs as resources.
Gwenn: There is always a sense of urgency and balance.
Jen: This is a perfect example, and if you try something that isn’t a proven therapy, talk to your child’s doctor. And if your doctor isn’t willing to work with you, go to a new doctor.
Gwenn: It’s not that the doctors are not up to date, and each child is unique. Your doctor’s job is to help you find the information that will help you. The blog world makes anxiety level increase.
Caryn: When you reach out to investigate support groups, it is equally important to reach out online to groups as well as reaching out to your doctor.
Kim: Her husband went into the ER for gall bladder, and he got a diagnose for diabetes, and her first thought was to reach out to a respected blogger in that field. The site was able to give her things like the experiences she was going to go through.
Heather: She is confused with trying to find accurate information on autism on line. There is a great distrust in the medical community in dealing with autism. It is hard to blog about this when the sites are controlled and motivated by profit only.
Gwenn: This isn’t a panel on autism, but we can discuss the medical system and distrust of medicine in general. The blogosphere has helped this distrust. The doctors are barely reimbursed for things.
Kim: She was researching this morning on about.com and it says reader beware. You should trust your intuition when looking at sites. Don’t take one site, get second opinions on the web. People are getting information saturation, and you are getting the same information on multiple sites. As you go to different sites, you need to be the filter.
Gwenn: What this comes down to is the relationship with their doctors. People are going online when they aren’t getting the info from their doctor.
Jen: Go to your pediatrician and talk to them. You should be asking the hard questions of your doctor, and stuff is gray. Medicine isn’t exact, and you should ask why something doesn’t make sense to you. You need to make up your decisions in your head, and we should do some responsible blogging.
Gwenn: Has anyone taken information from your online world to your healthcare provider?
Jennifer: She has had a sore on her leg, and she googled to try and figure out what it was. She saw her neurologist, and she was told to get it taken care of right now. She went to the dermatologist, and she was told not to go to google for a doctor. She just didn’t know where to start – which doctor to see first.
Gwenn: Her Dad has an allergic reaction to his blood pressure medicine and he spent three hours googling the symptoms because he said he felt fine. He finally went to the ER, and came close to needing major drugs. He still thinks that people made to much of it. We need to know when to google and when to go to the ER or call your doctor.
Caryn: We laugh, but we are reluctant to go to the doctor for ourselves. We have a responsibility to encourage people with our own experiences. And we should encourage to seek professional help.
Jen: It is a good way to gather questions to take to their doctor, but google doesn’t tell you that croup is common, but a tumor is not common. The context is what your healthcare provider will give you.
Audience member: We go online for information mainly because going to the doctor costs money, and ER trip will cost $300. We are always looking online for expert advice online because money is an issue.
Gwenn: She wrote an article on this recently. Doctor office are open 24/7 just like google. Doctor’s like to give advice on the phone (some offices have better triage services than others). There are reliable sites.
Jen: I think the medical community has not caught up to the technology yet. There could be an online communication. But insurance companies don’t reimburse for online services or even phone services.
Gwenn: There is a digital gap right now.
Mary: What she gets concerned about when googling are the number of personal blogs that have bad healthcare information on them. What do you tell people to do when doing online research?
Gwenn: What is a an expert?
Kim: Healthy skepticism is good. If you are outside the mainstream, read everything with a grain of salt. See if you can locate it elsewhere. See if it is an opinion found elsewhere.
Caryn: Do your research on your research. See when it was updated and who is doing the update. See who is behind the site. You have a responsibility to do that. The emotion behind may be of value, but the medical information may be out of date.
Jen: Medical information does change frequently, make sure you have the most current information. And if you see something wrong, call the person on it. Email the person or comment or question the person.
Gwenn: Look for the person giving out expert information, make sure the person is an expert. Be wary of someone who says doctor when you can’t find their information on their profile for their doctor degree. Go by the rule of threes, have you found the information in three other places.
Audience member: There has been a controversy in Canada, child was dying and the father wanted to donate the child’s heart. This was not normal practice for a child. The father was very public about this, and the hospital went nuts. The father kept questioning the hospital about the practice. He ended up going quiet, because doctors and nurses were writing about them on their blogs anonymously and hacking him.
Gwenn: In the US, this would have been a malpractice suit. In the US, a blogger liveblogged his own malpractice suit. He blogged in so much detail that everyone knew exactly what he was blogging about. Based on this, the code of conduct was set. You should never blog about a patient where they would figure out who was being blogged about.
Christina: How do you as medical professionals with patients coming to you with the information they get online?
Jen: As a pediatrician, the medical profession is transitioning to a partnership model with the doctor and patient. Patients are becoming more active, but some doctors have a hard time with this. She totally encourages what you find online as long as it is a two way street and you listen to what she has to say as well, a true partnership.
Gwenn: It’s a tough battle to get the doctors to change. This is getting put into the medical curriculums.
Kim: Bring it on, she wants to know what you found when you googled something. She can work between the patient and the doctor as a nurse. It helps if you have done research, bring the bullet points, not 20 pages from WebMD and what do you think about this. Your time is limited in office visits.
Audience member: Are there things that we should know about that aren’t being said?
Gwenn: We give handouts, but parents toss those. Things need to be more online. Kidshealth.com talks about many things. It has taken many years to have the medical world think like the parents would think.
They finished the panel with a review of the items they talked about during the session, check resources, get multiple opinions, seek out communities for emotional support. Go to your doctor as your last step of the way.
(Live blogging by Hokieamy , Saturday, July 25, 2009)
Stay-tuned for part II of my session wrap-up where I’ll pass on some insights on what I was thinking as the session was going on and some post-session thoughts.