We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people who are making contributions to helping patients and caregivers worldwide. The people in this Q&A series may not be affected by, or focus on, the same type of disease or condition that affects you, but we hope you find the interviews interesting and insightful. We post these interviews in a question-and-answer format in my Inspire Journal here as a news feature for Inspire group members across our many support communities.
Deanna Attai, MD is a Burbank, CA surgeon whose practice focuses exclusively on the care of patients with benign and malignant breast conditions. She is heavily involved in cancer- and health-related discussions on social media sites, and is best known online as co-moderator for Breast Cancer Social Media–a patient-focused breast cancer support group on Twitter. (There are a number of members of the Inspire Advanced Breast Cancer Support Community who are part of the BCSM Twitter chat.)
Attai is on the board of directors of the American Society of Breast Surgeons.
Inspire: You are very aware that more patients are going online to try to manage their medical conditions, or those of loved ones. What do you think drives them?
Attai: One reason that patients turn to online sources for information and support is that their physician may not spend enough time with them for them to have a good understanding of their condition and treatment options, which certainly can be frustrating. Sometimes it's just to confirm that what their physician told them is a reasonable and standard option.
Inspire: How do you think patients can best communicate what they’ve learned from online research to their clinicians?
Attai: I think that if a patient has obtained information about their condition from an online source, and if it differs from what was discussed with their physician, they should bring that information to the attention of their physician. Maybe it was not discussed initially because it does not apply to the patient's individual case. But sometimes a patient may come across some information that their physician did not consider or was not aware of.
Inspire: I suspect many physicians would consider all the time and effort you put into Breast Cancer Social Media and think that it's not worth your time. I saw you write in an online column recently that "the hours (being a surgeon) are incredibly long, and my life is never my own." So, how does all this online patient-related work benefit you?
Attai: Especially now, all physicians are struggling with the "not enough hours in a day" syndrome. For me, being involved with social media has become an integral part of my practice. It allows me to reach out to a much larger group of patients than I could ever see in my daily practice. And it also allows me to educate my existing patients on an ongoing basis. I don't think any patient has made an appointment for a consultation because I'm on Twitter or Facebook. However, I think that the patients who do see me appreciate that they can have some additional contact and education, even outside normal office hours.
Inspire: How does it benefit you as a clinician?
Attai: For me personally, I've learned so much from the Breast Cancer Social Media participants. Often people will share details about their treatments and how it really affects them in a more open and honest way online compared to in person--my participation in the support group chats has given me more insights into what my patients are really going through, and has allowed me to have a better understanding of their concerns and fears. And more understanding means that I can take better care of my patients.
Inspire: It seems we're in the early stages of the "e-patient," particularly related to how patients leverage technology and online resources to help manage their own illnesses. What do you see as the highest and best use of healthcare social media?
Attai: There are many forms of healthcare social media and I don't know what is considered the "best." Honestly, I think that answer is different for everyone. Being an e-patient means so much more than reviewing message boards. It means that you are truly engaged in your care. I don't think this is new, but what is new is that more and more physicians are embracing this and recognizing that a partnership with their patients actually benefits both the patient and the physician.
Inspire: What advice would you give to patients who are reluctant to discuss with their physicians information that the patients got online, through a clinical site or an online community?
Attai: I would say if your physician is not willing to discuss outside information, you might want to consider getting another physician. While most of the time when a patient brings me information from an online or other source, it's something we've either discussed or is not relevant to their care, there are times when the information is something that was not considered, and may or may not be of benefit to the patient. Whether or not the information is really relevant to their care almost doesn't matter--the patient has questions and needs answers. It's up to the patient to get guidance so that they can make decisions right for them. It's the patient's responsibility to speak up, and it's the physician's responsibility to listen.
Inspire: How exactly do you react to your patients who want to talk with you about online clinical information?
Attai: I always end my consults with the phrase, "Call me if you have any questions. Write down your questions and call me.” And patients do call.
Inspire: What do they ask?
Attai: Sometimes it's just for clarification, sometimes it's to discuss something they've read about and want to know if it applies to their case. If a patient has unanswered questions or lingering doubts going into treatment or surgery, they will not be happy with the outcome. I don't have any patient that is truly comfortable with the idea of undergoing surgery for their breast cancer. But I encourage them to ask all the questions they need so that they understand the treatment options and feel that they have made the decision that is best for them.
Inspire: What kind of changes have you seen in the survivors who participate regularly in the BCSM weekly chats on Twitter?
Attai: It does seem that over time, the women in the chat have become more open about asking questions and simply standing up for themselves. The group is so supportive and provides such a safe environment for discussion that even patients that are new to the chat don't take long to start speaking up and either asking questions, asking for help, or sharing their experiences so that they may help others.
Inspire: What is your long-term objective is for BCSM?
Attai: I have many hopes and dreams for BCSM! But the main one is that we can expand our outreach beyond Twitter. While the community has grown tremendously, it is a small percentage of patients, caregivers, and practitioners that are active on Twitter. We have to find ways to reach the larger community of breast cancer patients. And I am confident that we will!
If you have suggestions for future Inspire Q&As, contact me at firstname.lastname@example.org. Feel free to post your thoughts on this interview. Thanks for reading.