Last week we posted about communicating about “Dr. Google” with your own real doctor. Now, we’ll dive into some more details. As I mentioned, I conducted an online “survey” to gain insights into the experiences of patients and physicians during October 2013. Specifically I tried to find out about what happens during appointments when patients present health information found on the Internet to their physicians. The word “survey” is in quotations because this is not a scientific survey… the people who completed these surveys are not your average patient – they are active on the Internet, using both LinkedIn and Twitter on a regular basis.
Thirty-nine (39) patients completed the patients survey and seventeen (17) physicians completed the physician survey. So the results are merely a snapshot, but also an interesting beginning to understanding the patient-physician experience. This post describes the findings of the patients survey. The next post will review the physician survey.
What Patients Say
First, patients are sharing information that they find on the Internet with their physicians (82%) but tend not to do so using printouts (only 41% share printouts).
Most were not afraid to bring this information to their doctor (79%) and only 11% said that their physician belittled the research they had done.
Half said that they agreed or strongly agreed with the statement “My physician listens to and respects my Internet research.” Unfortunately, one-third disagreed or strongly disagreed with this statement.
Sixty-four (64%) percent agreed or strongly agreed with the statement “My physician spends time discussing my findings on the Internet.”
Of the people who had positive experiences discussing research, 62% felt that the physician’s personality made this possible.
What Strategies Do Patients Recommend?
The people who thought their strategies made informing physicians possible described those strategies as:
1) Getting credible sources:
“I only cite results from top medical journals.”
“I had to get several sources for my point and they had to be credible. I also threw in that another MD was agreeable to this and that made a little difference.”
2) Keep it very short.
3) Have research easily accessible.
The Good, The Bad and Patient-Physician Communication
Finally, those surveyed described good and bad experiences of sharing Internet information with their physicians.
When reading these comments, it is important to remember that people are more likely to share negative experiences and to remember the negative far more than positive. Yet only a third of the comments were negative, and they included:
“I wish my physician would listen more carefully.”
“She didn’t think that what I found was actionable. That was years ago and I have nor taken anything to her since.”
“My physician is utterly dismissive of anything I say to them. I am now changing doctors.”
“The way to describe my physician confronted with Internet research is ‘annoyed.’ Eye roll, you’re-wasting-my-time-annoyance.”
“Very limited rapport with doctors over last few years, difficult to even get medical care, never mind share information or research.”
“First of all I’m still trying to find a general practitioner. Physicians on twitter are friends and are so remarkable and I find myself so sad I can’t even find a physician who will listen to me.”
What can be gleaned from these comments is that patients want physicians who listen. Patients will search for physicians who are interested in what they have to offer.
The positive comments (2/3) confirm this assertion.
“My doctor is very well informed, so he’s known about anything I’ve brought up, and has agreed with me that it might be right for me. (It’s usually drug information.)”
“Sharing with my son’s pediatrician about alternative medicine/natural medicine to help ADD vs using the standard drugs, Ritalin…He thought it was a great idea to try it first and then use the drugs as last option.”
“Our docs are open minded, think out of the box… They are on top of research and technology!”
“Trained as a biochemist. Research showed Provigil used off label to treat chronic fatigue for RA. Explained to rheumatologist. He agreed to prescribe. Fatigue no longer a major issue for me due to Provigil and doctor being open minded. Life changing.”
“My research was done on professional websites, including excerpts from medical journals, drug manufacturers, and NIH—same resources Dr. would use. Not anecdotal nor WebMD style Internet info but same resources physician would use if he had time. Illustrates importance of medical research/studies being available to public. I gather, Dr & I review together, Dr interprets, Dr makes recommendation. Serves a healthy Dr-patient relationship.”
“I have been going to my primary care physician and gynecologist for decades I always have in-depth conversations with them and trust each of them completely.”
“I came off tamoxifen in Feb 2013 and I had been following the San Diego breast cancer conference. A report came out that taking tamox for another 5 years (10 years total) is beneficial to some patients. I rang my oncologist, she rang me the next day, discussed what I had found, and set out pros and cons, and agreed it would be beneficial therefore started another 5 years. I do believe though that if I hadn’t asked I wouldn’t have been given the opportunity. It happened that I had finished my 5 year course then but how many have not been given the choice?”
“I am fortunate that my oncologist is up-to-date on research and that helps me feel confident when discussing what is best for me. It’s so important to choose a doctor that I trust and that will listen to my concerns.”
“One piece of information I emailed to him he later told me he had taken to the Friday meeting of breast cancer oncologists. He had told them before they did anything else they were to read the article, then they would discuss. It was an eye-opening article and it made me very proud that they took it seriously.”
“When I first got sick, everyone could not figure it out. So I spent hours researching my symptoms and I took it to my doctor and he agreed and sent to UCSF to confirm it. I was right.”
Conclusions
From this survey, although limited in its scope, it is suggested that providing information to the physician that is based on trusted medical journals makes a big difference. Respect and trust seem to be the results of these positive interactions between physician and patient. Patients feel more empowered when they are doing their own research and coming to the doctor with a better understanding of the options, even making suggestions. As always in life, not just with doctors, people feel good when their suggestions are accepted. With patients, there is an even greater feeling of empowerment as they feel they are taking control of their lives.
The experience seems beneficial to both parties, as you’ll see in our next post that will review the findings of the physician survey.
Please feel free to share your experiences as a patient sharing Internet health information. What have you found other strategies that are helpful to bring new information to be discussed with doctors?
Has being a subscriber on Medivizor.com helped your physician-patient communication?
I have not taken much research to my GP doctor but with my last problem she did prescribe a very effective ointment that my online support group friends had used.
She just looked it up in the CPS and wrote the Rx after a discussion, so I guess she does respect what I know.
Annette, Thank you so much for commenting and sharing a positive experience of health information sharing! Do you feel that this is a change in the way that your GP is interacting?
Kathleen, thanks for sharing this information. I especially appreciated your comment about respect and trust, but I wonder if it’s a result of the positive interactions, or the cause of them. As publisher of labtestsonline.org, a patient education site that hosted its 150 millionth visitor earlier this year, I have long held that what we provide our users is not lab testing information, but a credible resource that recognizes the stress our users are feeling from whatever medical issue caused them to be on our site in the first place. While the site aims to give users the language and concepts they need to engage more productively with their practitioners and their care, we have never asked them, “How did it go?” I think we’ll add this idea to the development list for next year. Thanks!
This is great information. We have some qualitative study findings from focus groups which we are presenting at an event on Saturday #eROAR13 – about ethics and e-health and patient-doctor relationships. Patients are also speaking about their experiences of e-health at the event. Trust and respect important in our results too. Patients also described how they prioritize and prepare what they take into the consultation so they can have a meaningful discussion with their doctor. This suggests we ask how can patients and doctors best be supported to engage with each other – some of our participant patients gave very positive descriptions of patient-doctor engagement via e-health resources but trust and respect from both was crucial. Thanks for sharing.
Anne, thanks for sharing. When you have results of your study published anywhere, please share a link here. We’re confident people will find it interesting/useful.
Thanks!