Ann Surg Oncol (2016) 23:3088–3092 DOI 10.1245/s10434-016-5309-x

ORIGINAL ARTICLE – BREAST ONCOLOGY

What Are We Missing? Deanna J. Attai, MD, FACS David Geffen School of Medicine at UCLA, Los Angeles, CA

It is a privilege to be standing before you today. When I joined this organization in 2002, as a general surgeon in solo private practice, I never imagined that I would one day serve as President. MISSION OF THE AMERICAN SOCIETY OF BREAST SURGEONS As a young committee chair and board member, I was struck by the number of times I heard someone ask, ‘‘What is in the best interest of our members?’’ That phrase is at the core of everything we do. As an organization, our mission is to ‘‘serve as an advocate for surgeons who seek excellence in the care of breast patients, by providing a forum for the exchange of ideas, and by promoting education, research and the development of advanced surgical techniques’’.1 But is there something that we are missing? INTRODUCTION TO SOCIAL MEDIA AND THE PATIENT PERSPECTIVE In 2010, I joined Twitter; however, most of you probably do not realize that I joined because of The American Society of Breast Surgeons (ASBrS), or, more specifically, I joined because of Sharon Grutman, an ASBrS staff member who worked with me on the Communications Committee. She thought that a social media presence would help improve the visibility of our Society for current and prospective members, the media, and the general public, including patients. We developed a proposal to present to the Board of Directors. While I strongly agreed that a social media presence for our organization would be of value, I had no personal

Ó Society of Surgical Oncology 2016 First Received: 8 April 2016; Published Online: 16 June 2016 D. J. Attai, MD, FACS e-mail: [email protected]

experience with any of the social media sites; however, I set up my accounts so I could understand the platforms before putting together an outline for the Board. There were not many breast surgeons active on Twitter at the time. There was, however, a large patient community. Breast cancer patients ranging from the newly diagnosed to those living with metastatic disease were online supporting one another. It soon became very clear that many were lacking basic information. I stumbled upon conversations between women and men who were trying to find answers to some very basic questions—questions that should have been addressed by their physician. In some cases, the patients truly had not been educated; however, in most cases, the patients had received the information, but it did not register with them. We know how overwhelming it is for a newly diagnosed breast cancer patient to absorb and process the large volume of information that we present. We take our time, we diagram treatment options, and we try to answer all questions. But often times, patients leave the office and they have not heard a word. We give them so much information and there are so many choices. We think choices are good but too many choices during a time of intense stress can be overwhelming. Historically, physicians were at the center of patient care. We had the knowledge and we told patients what to do. For the most part, patients went along with our advice. We were also in a time of limited choices, especially for breast cancer treatment. One size fits all, and quality was defined on our terms: cure patients of their disease without doing harm along the way.2 Patients and physicians now receive information from multiple sources, and anyone with a search engine has unlimited access to medical information. Instead of being the sole source of information, physicians now serve as guides and interpreters for patients, helping them to make decisions.3 There is often more than one right answer, and there may not even be a ‘best’ answer. One size most certainly does not fit all.

What Are We Missing?

Patients are also more educated than ever, even as cancer care becomes more complex. There are a growing number of ‘e-patients’—equipped with skills to manage their condition, enabled and empowered to make choices about their care, and engaged in their care. They want an equal partnership with their physician. Do not make decisions about my care or about what is ‘best for me’ without my input. Understand where I am coming from, and help me make a decision that is right for me. ‘Nothing about me without me’ has become a tagline for many patient advocacy organizations.4,5 While we think of e-patients as a relatively new concept, Shirley Temple Black, when discussing her breast cancer treatment in 1972, stated ‘‘the doctor can make the incision, I’ll make the decision’’.6 PATIENT-CENTERED CARE AS A QUALITY MEASURE In their 2001 report, ‘‘Crossing the Quality Chasm’’, the Institute of Medicine described six domains of healthcare quality; one was that healthcare should be ‘‘patient-centered: providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions’’. The ‘10 rules for redesign’ state that ‘‘the patient is the source of control’’ and that ‘‘the health system should be able to accommodate differences in patient preferences and encourage shared decision making’’.7 We know this is the right thing to do but patient-centered care is very complex and there are multiple challenges. Time with our patients is increasingly limited and there are an ever-growing number of administrative barriers. We present a large amount of complex information to patients during a time when their normal coping and processing mechanisms are not functioning well. So how do we get to that place of patient-centered breast care and shared decision making? How do we know what is important to our patients? One common way to uncover patient preferences is to develop surveys. The Centers for Medicare and Medicaid Services (CMS) and other healthcare policy makers have emphasized patient surveys, and the Affordable Care Act mandates patient-reported outcomes as an accountability quality measure. The results of these surveys are increasingly being tied to reimbursement.2 It sounds simple enough, survey the patients to find out what is important to them, but ask any of your breast cancer patients how many surveys they receive. They often receive a survey from the hospital as well as the physician’s practice, usually around the same time that they receive their bill. As patients become part of the state cancer registry, they receive

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solicitations to participate in various research surveys. We send out a survey to satisfy a regulatory requirement so we can check the ‘patient-centered’ box, but patients do not feel that their voices will truly be heard. At some point the patient says ‘stop’. PATIENTS AS PARTNERS The typical ‘patient-centered’ diagram consists of the patient in the middle and all of the other components on the periphery (Fig. 1). There are a growing number of patients who have noted a problem with this model. What many patients really want is for the problem or the disease to be in the center. The patients want to be part of the solution, and they can only do that in partnership with us, side by side (Fig. 2). In discussing the relationship between the patient and the physician, Bardes noted that in a patientcentered universe, ‘‘neither is king, and neither is the sun’’.8 PATIENT-CENTERED CARE AND THE MISSION OF THE AMERICAN SOCIETY OF BREAST SURGEONS Getting back to the mission of ASBrS, our primary focus is our members but we need tools to help us manage the challenges of patient-centered care. As an organization, we have been addressing some these challenges. During Dr. Howard Snider’s term as President in 2011, the Board

FIG. 1 Courtesy AnneMarie Ciccarella

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(Mastery) program, you will receive a prompt to invite your patient to take a survey. The patient receives an email, which allows them to securely log into the patient survey site. The patient does not have access to Mastery data. Once you have five completed surveys on a specific procedure you will be able to view your results and compare them with those of other members. Patients should be assured that you have no access to their individual survey results. We currently have over 300,000 patient encounters recorded in the Mastery, but only approximately 300 completed patient-experience surveys. As individuals and as a Society, we need to improve our efforts to determine what patients think about our care—we need to back up our statements that we value the patient’s opinion. NURSE BEDI—SHARED DECISION-MAKING TOOL

FIG. 2 Image Courtesy AnneMarie Ciccarella

approved the Patient Advocacy Liaisons (PALs), a group of patient advocates, primarily recruited from social media, who have partnered with us on various projects. This was the first step towards bringing the patient voice into our organization. PATIENT EXPERIENCE SURVEY In 2012, recognizing that patient care is not excellent unless the patient thinks it is,9 our Patient Safety and Quality Committee (PSQC), chaired by Dr. Jeffrey Landercasper, evaluated existing surveys and found that they were suboptimal for measuring the breast cancer patient experience. This motivated them to develop a better survey, one more tailored for breast patients. The PSQC, along with Drs. Eric Whitacre and Leonard Berry, created surveys for different breast surgeon–patient interactions, including mastectomy, lumpectomy, and needle biopsy. Patient advocates Marie LaFargue and Alicia Staley were enlisted to help refine the surveys. It became clear that we do not always know what outcomes are important to our patients. Without that critical piece of information—understanding what outcomes are important to patients—we cannot really assess the quality of our care. As any patient will tell you, a benign biopsy is not necessarily a benign experience.10 The patient experience survey is simple to use. After entering a procedure into the Mastery of Breast Surgery

Studies have shown that the use of decision aids results in patients who are better informed, have a more realistic understanding of treatment risks, are more likely to take decisive action, and are more likely to make decisions consistent with their values.11 Nurse BEDI, described by Dr. Rena Kass, is a shared decision-making tool that was developed at Penn State with input from our Education Committee. Drs. Jane Mendez and Kristine Widders helped oversee the Spanish translation and ensure cultural appropriateness. It is available to all members and can help you navigate difficult decisions with your patients, as well as provide an assessment of the patient’s knowledge and values. Currently it is housed within the Mastery but will eventually move to the member section of the ASBrS website to make it more accessible. PATIENT EDUCATION WEBSITE BREAST360.ORG Our patient website, Breast360.org, was launched last fall. This ambitious project, which is supported by our Foundation, was championed by ASBrS Board and Foundation Chair, Dr. Richard Fine; ASBrS Board member, Dr. Carrie Thoms; website consultant, Dr. Richard Altman; and a large team of ASBrS members and staff. Breast cancer patient advocates played key roles in the development of the site, including the name, logo, and content. They continue to be involved in content suggestions and review. Through the site, we provide the credible information that our patients have told us they want and need. If you have not visited Breast360.org, I encourage you to do so. It is a valuable resource for your patients.

What Are We Missing?

FUTURE DIRECTIONS As an organization at the forefront of setting practice guidelines for breast surgery and defining the standard of care, we need to realize that our medical recommendations based on existing guidelines sometimes involve value judgments that patients may disagree with.12 Montori et al. noted that while guidelines may simplify patient care, they must be applied within the context of the patient’s preferences, which reflects the optimal practice of evidencebased medicine.13 We have included the patient voice in our Contralateral Prophylactic Mastectomy forum that Dr. Judy Boughey spearheaded, as well as in last year’s Collaborative Attempt to Lower Lumpectomy Reoperation Rates, led by Dr. Jeffrey Landercasper.14 I hope that this practice continues. The patient voice also has a place in clinical trial design. At the 2015 Breast Cancer Symposium, during a debate on ductal carcinoma in situ, Dr. Benjamin Smith suggested that we ask patients what endpoints are important to them before we design our clinical trials.15 Are patients concerned with local recurrence, number of operations needed to complete treatment, complication rates, overall survival, or other factors? We will not know, and we will not be able to design trials to answer the questions that are relevant to patients, unless we include patients in the trial design process. Our primary responsibility will always be to you, our members, but each of us as individuals have our patients as our primary responsibility, and quality care cannot happen without patient input. As an organization, we are actually not missing anything. We have shown that we can successfully partner with the patient community to understand how to better provide the best care from the patient perspective in order to embrace the true definition of quality care. We will continue to evolve, finding new ways to fulfill that part of our mission. Safran noted that ‘‘in our country, patients are the most underutilized resource, and they have the most at stake. They want to be involved, and they can be involved’’.16 We need to continue to take advantage of this valuable resource. ACKNOWLEDGEMENTS I would like to close with some acknowledgements. First, I would like to thank my parents, sister and brother who have always supported me, and my father who was my first surgical mentor. I trained at Georgetown under Dr. Robert Wallace and Dr. Russell Nauta. Along with attending surgeons Dr. Steven Evans and Dr. Collette Magnant, and senior residents Dr. Daniel Miller and our own Dr. Richard White, they helped me become the surgeon and physician that I am today. I joined ASBrS in 2002, and Past-President Dr. Richard Fine was my first ultrasound instructor. It has been a thrill to serve as President during his term as Chair of the Board of Directors. I owe many thanks to several pastpresidents who took a chance on a relatively young member, entrusting me with a committee chair position and encouraging me to

3091 run with it—thank you Drs. Shawna Willey, Helen Pass, and Victor Zannis. They, along with Drs. Suzanne Klimberg, Howard Snider, Eric Whitacre, and Hiram Cody, have been instrumental in my professional development and have been incredible mentors. Last year Dr. Cody noted that it is easy to lead when you have a great team. I have been fortunate to be supported by a dynamic and forward thinking Board of Directors, as well as our Committee and Working Group chairs. Over 250 members volunteer their time serving on committees and working groups, or as representatives to other organizations; this is a testament to the strength of our organization that we have so many members passionate about our mission. We are also very fortunate to have the support of such an amazing staff. Led by Executive Director Jane Schuster, her team is our backbone—none of our initiatives would ever get off the ground without their support. Thank you, it has been an incredible honor to serve as your president. DISCLOSURES

None.

REFERENCES 1. The American Society of Breast Surgeons. www.BreastSurgeons. org. Accessed 20 Mar 2016. 2. Greenberg CC, Kennedy GD. Advancing quality measurement to include the patient perspective. Ann Surg. 2014;260(1):10–2. 3. Hillman T, Sherbino J. Social media in medical education: a new pedagogical paradigm? Postgrad Med J. 2015;91:544–5. 4. Billingham, V. Through the patient’s eyes. Salzburg Seminar Session 356, 1998. http://archive.salzburgglobal.org/current/ sessions-b.cfm?IDSpecial_Event=366 5. Society for Participatory Medicine. www.participatorymedicine. org. Accessed 20 Mar 2016. 6. Osuch JR, Silk K, Price C, Barlow J, Miller K, Hernick A, et al. A historical perspective on breast cancer activism in the United States: from education and support to partnership in scientific research. J Womens Health (Larchmt). 2012;21(3):355–62. 7. Institute of Medicine. Crossing the Quality Chasm: A New Health System for the 21st Century. National Academy Press; 2001. http://www.nap.edu/read/10027/chapter/1. Accessed 6 Mar 2016. 8. Bardes CL. Defining ‘‘patient-centered medicine’’. N Engl J Med. 2012;366:782–3 9. Tom Varghese Jr. MD (@TomVargheseJr). #PatientCenteredCare—a term often used, but not often done correctly [tweet]. 9 Jan 2016, 22:56. https://t.co/ZtdHF5PjRk. 10. Meyer Cancer Center (@MeyerCancer). ‘‘A benign breast biopsy is not a benign experience’’. We must take patients’ decisions into account. Dr. Margolese @McGillU #ASCO15 #bcsm’’ [tweet]. 16:10, 30 May 2015. https://twitter.com/MeyerCancer/status/ 604681330346094592 11. Barry MJ, Edgeman-Levitan S. Shared decision making: the pinnacle of patient-centered care. N Engl J Med. 2012;366:780–1 12. Ubel PA. Medical facts versus value judgments: towards preference-sensitive guidelines. N Engl J Med. 2015:372:2475–7 13. Montori VM, Brito JP, Murad MH. The optimal practice of evidence-based medicine: incorporating patient preferences in practice guidelines. JAMA. 2013;310(23):2503–4. 14. Landercasper J, Attai D, Atisha D, et al. Toolbox to Reduce lumpectomy reoperations and improve cosmetic outcome in breast cancer patients: The American Society of Breast Surgeons Consensus Conference. Ann Surg Oncol. 2015;22:3174–83. 15. Dr. Deanna Attai (@DrAttai). Smith what is the most relevant endpoint to patients? Mortality, local recurrence, other? Mortality, local recurrence, other? Calls for focus groups—role for

3092 SoMe #bcs15 #bcsm [tweet]. 16:37, 26 Sept 2015. https://twitter. com/DrAttai/status/647812338045726720 16. Safran C. Healthcare information technology. Hearing before the Subcommittee on Health of the Committee on Ways and Means,

D. J. Attai US House of Representatives. June 17, 2004. Serial No 108-55. https://www.gpo.gov/fdsys/pkg/CHRG-108hhrg99674/pdf/CHRG108hhrg99674.pdf. Accessed 27 Mar 2016.