Presentation to the Forum for Japan Cancer Patients

Nicola during the presentation

Nicola during the presentation

The health care quality and safety movement in Massachusetts got a boost, in 2008, when the legislature mandated that every hospital in the Commonwealth, licensed by the DPH, establish and sustain a Patient and Family Advisory Council. The law defines PFACs as follows: “Patient and family advisory councils (PFAC) are groups of patients, family members, and hospital staff who work together to bring the unique perspectives of patients and families to hospital's operations, especially its efforts to improve care.”

Although they are the primary stakeholders in the health care system, patients have historically been left out of crucial decision-making about their own care and out of the processes and procedures that govern the delivery of care to the communities that hospitals serve.  The PFACs are a significant way to bring the patient voice to specific hospital operations such as patient and provider relationships, institutional review boards, quality improvement initiatives, and patient education on safety and quality matters.  They are also an important force in on-going changes to the culture of hospitals, which have tended to be unsupportive of patient preferences about treatment and desired level of knowledge.  The term “patient-centered care” is used to describe the ideal health care delivery system, which hospitals are very slowly embracing.

As one of the early Patient Advisors at the Beth Israel Deaconess Medical Center, I have witnessed that hospital’s staff’s gradual acceptance of, and increased comfort with, the involvement of patients in matters that traditionally have been considered unsuitable for them.  Patients are now active participants in numerous standing hospital committees involving medication safety, quality of care, doctor-patient communication, and ethics, in groups that manage ambulatory care and intensive care unit operations, and in all manner of other clinical and administrative undertakings that are part of the functioning of a large academic medical center. 

Furthermore, during the last six years, a slowly emerging partnership between patients and health care professionals has enabled more patients to become involved in their own care to the extent they desire, as educational materials and clinical functions become more incisively focused on the needs of the patients, as defined by patients rather than by hospital staff.  

Two of these participatory endeavors at the BIDMC are the Open Notes program, where patients have the right to see and comment on the notes that are written about them during or after appointments and Patient Site, which enables each patient access to his/her medical records, direct email communication with clinicians, and the availability of educational resources.

Yet, all hospitals in Massachusetts and around the country have a long way to go to become truly “patient-centered,” a status to which many hospitals aspire and about which they are increasingly audited by accrediting agencies.


It was in my capacity as a Patient Advisor that I was invited to Tokyo to speak about PFACs in Massachusetts to a group of about 100 Japanese cancer survivors who seek to move the Japanese health care system, as it relates to cancer diagnosis and treatment, closer to the emerging system of care in the United States. 

My host was the Chugai Academy for Advanced Oncology (CHAAO), a small, non-profit group whose mission is to support and engage cancer patients in their care – giving them resources, administrative help, and some funding to conduct their educational work in numerous cancer patient support groups all over Japan. CHAAO is a non-commercial spin-off of Chugai Pharmaceuticals, part of the Roche Group. 

The focus of the two-day conference was on empowering cancer survivors to engage with the health care authorities (Japan has a national health care system) to encourage cancer patients to take more control of their care in partnership with their doctors and to be more directly involved in the search for treatments.

The cancer survivors came from all over Japan, each identified by the name of their peer support group, type of cancer represented, and the prefecture (similar to a state) they hailed from. They met under the auspices of CHAAO for the first time last year with the common goal of seeking ways to learn more about cancer and to better support and educate cancer patients and their families. They decided on six subjects to study during 2015, and returned to Tokyo, in January 2016, to report on what they learned. 

The subjects included marketing, raising money and obtaining members; education about the cultural stigma of cancer; and the basics of patient-oriented research (clinical trials). There were discussions about the involvement of patients in the planning of clinical trials for cancer treatments, a discussion of the World Health Organization’s publication on patient decision-making, and in-depth presentations on the science and chemistry of different types of cancers. 

My presentation explained the work of the 100 or so Patient and Family Advisors at the BIDMC – work such as advisor rounding on patient floors to gauge the satisfaction of patient experiences in real-time, active participation in clinician training about ways to disclose medical errors, and collaboration with Intensive Care Unit management to create a coordinated system of communication about a patient’s clinical status while in that overwhelming and busy unit.

I gave my talk in English accompanied by simultaneous translation to Japanese.  It was much harder than I anticipated!  There is a rhythm one has to establish, in order for the translator to understand the substance of each sentence and translate it into the Japanese sentence structure that differs so much from ours.  Speaking each word slowly does not work, since that delays the understanding of the each sentence.  I had to say the sentence and then pause for 3 – 5 seconds in order for the translator to catch up. I had trouble with this during the 45 minutes I spoke, but I gathered from the questions asked afterwards that most people got the gist of what I was saying. 

The audience seemed most impressed with the hospital management’s support of patients’ efforts to work with them and with the amount of time health care professionals, including doctors, spent on the “emotional” needs of patients, in addition to the purely clinical aspects of care. There was a great deal of excitement and interest about the dynamic, patient-driven work happening in the Commonwealth, and we had discussions about how they might reproduce some of our programs in Japan. I was struck by their interest in why Massachusetts was, and remains, the only state in the US to mandate PFACs in hospitals and by the high level of discourse about cancer treatment, patient care, and the mechanics of the national health system. 

Perhaps the most significant take-away for me was the absence of what we, in the West, view as a Japanese cultural norm - passiveness and conformity.  The speeches given and questions asked, the individual group programs presented and interactions between attendees all belied this assumption. The people I met are actively and passionately involved in making prevention of cancer and care of cancer patients a collaborative endeavor, no longer the sole purview of the medical establishment.  They are determined to change the paradigm of cancer care in Japan and insist that the patient is an important and equal partner in that effort.

View of Tokyo, Tokyo Tower, and Mt. Fuji

View of Tokyo, Tokyo Tower, and Mt. Fuji