#ESMO14 Tidbits


ESMO 2014 is taking place now in Madrid, Spain. The ESMO website summarizes the goal and theme of the conference as follows:

The theme for ESMO 2014 is ‘Precision Medicine in Cancer Care.’ Whether you are a medical or surgical oncologist or a radiation oncologist, immunologist or pathologist, practising precision medicine means we are all working towards a common goal – improved patient outcomes. This is the ultimate goal of ESMO 2014.

Attendees can expect detailed exploration of the practical, political, and financial issues that stand between our ideals and the reality of implementing optimal care for every person suffering from cancer.”

About 18,500 individuals (over 15% from the United States) are attending the conference, an 11 % increase over 2012 attendance (the conference is held every other year).

So far, the conference is a huge success, with some breakthrough news as follows:

  • Real progress in targeted therapies for melanoma
  • New medicine to help advanced cancer patients gain weight
  • New medicine to fight chemo-induced nausea and vomiting
  • New data that shows women that are pregnant and have cancer should not be afraid of chemo hurting their fetus

The twitter stream has been quite active – in multiple languages! The hashtag is #ESMO14

ESMO twitter stream

There is one “kerfuffle” however. Apparently, Spanish “authorities” ban journalists, patients, patient advocates and nurses from visiting pharma and non-profit organization booths. The reason is not quite clear and those who are tweeting have been asking questions. Read an article about the “ESMO exhibit floor kerfuffle” here.

The overall feeling at the conference though, is one of excitement. There is a lot going on in the way of new research and treatment. And the takeaway is that there is real progress ahead.

Interconnectivity in Healthcare: Patients, Providers, Technology, Research

Patients Included!

The future of healthcare involves patients and providers working with business to develop tools and processes contributing to better Doctors20health for all. The recent Medicine X 2014 conference at Stanford University is an example of this type of collaboration. Medicine X and Doctors 2.0 (an international conference that takes place in Paris in June) are two medical conferences where patients are not just “invited” but are an integral part of the program.

Attended by more than 650 people and watched via webcast by thousands more, Medicine X was created by Dr. Larry Chu and his team of healthcare professionals and empowered patients. The conference focuses on social media, mHealth, health information technology and how they can improve the provider/patient relationship. An excellent review of the conference summarized the key sessions.

Patients” and technology’s influence on the new pharma

Discouraged by the lack of transparency in clinical trial results, Matthew Charron, a patient panelist asked pharma to be more cooperative, helpful, engaged and transparent..

Chronic illness and depression

Patients and caregivers relayed their fear and anxiety in dealing with challenges. Resources are available. How can technology help connect people with these resources?


How can self-tracking help the patient with a chronic illness? And can self-tracking be counter-productive? Patients questioned the use of self-tracking and clinicians mentioned the challenges of reviewing and analyzing the large amounts of data that people track and bring to visits. The challenge here is to make the resource more empathetic and to make the data be more easily organized.

Technology and socioeconomics

Underserved populations have a low level of health literacy and a high level of depression. Outreach needs to be easy and affordable and available in different languages. How can technology best reach these groups?

Big data

How can we best use data to help people find a doctor or rate a provider? And how do we best teach patients how to use the data they have? Patient satisfaction is important, but how best to report it and use it is just as important.

The future

The future is positive for change and improvement. Patient involvement and collaboration with providers and business will result in improved healthcare delivery through technology. Ongoing discussions and learning opportunities are necessary and available through many patient advocacy groups and organizations such as The Society for Participatory Medicine and Stanford MedicineX’s new  online academy for ongoing learning.



Patient Family Advisory Councils: What They Are, How They Help

Patients, families and caregivers talk at a recent live patient forum

Patients, families and caregivers talk at a recent live patient forum

Recently, the formation and active participation of Patient Family Advisory Councils has been gaining ground at major medical centers. These councils are comprised of patients, family members of patients and employees from different departments in the medical center.

The idea of families of patients being considered as part of the medical team and not as “visitors” is more practical, more helpful and results in much better patient satisfaction and overall patient outcomes. Patients want their family members as part of their team and their support group. They trust them and rely on them. And no one knows the patient better than those close to them.

The Institute for Patient and Family-Centered Care  has great information about creating PFACs, including recruiting participants, developing bylaws and processes, and sustaining the council.

The Agency for Healthcare Research and Quality (AHRQ) also has some good information about why a PFAC can help further patient-centered care efforts in improving the delivery of care. The cahps website  explains,

“These councils help overcome a common problem that most organizations face when they begin to develop patient-and family-centered processes: They do not have the direct experience of illness or the health care system. Consequently, health care professionals often approach the design process from their own perspective, not the patients’ or families’. Improvement committees with the best of intentions may disagree about who understands the needs of the family and patient best. But family members and patients rarely understand professional turf boundaries. Their suggestions are usually inexpensive, straightforward, and easy to implement because they are not bound by the usual rules and sensitivities.”

Many major health centers now have PFACs. Some are new and some have been around for quite a while. Mayo Clinic formed a PFAC in 2004 and on the website, they describe some of the projects it has participated in, including improving wheelchair access, improving health literacy, evaluating health history forms and others.

Dana Farber Cancer Institute in Boston, MA established a PFAC in 1998. According to the Dana Farber website, the council has spear-headed the following projects:


  • Helped design treatment, program, and common areas throughout the Institute, including the award-winning Women’s Cancers Program;
  • Participated in renovations to the radiation therapy unit at Brigham and Women’s Hospital;
  • Launched a “Patients as Educators” program to share experiences and feelings about oncology patient/provider relationships with small groups of nurses and doctors;
  • Advocated for increased psychosocial support services;
  • Addressed patient parking policies;
  • Worked with Patient Accounting to create more patient-friendly billing letters;
  • Participated in planning for the Complementary Therapies Program;
  • Launched Side by Side, a quarterly newsletter for patients;
  • Served as a national model for patient-family participation in clinical-care services.


MD Anderson Cancer Center in Houston, TX has always been involved in patient-centered care, but the PFAC was just created last year. Patients and family members actually helped in the creation of the council, writing bylaws, developing strategies and recruiting members.

I spoke with Kay Swint at MD Anderson who co-chairs their new PFAC with 2 patient/family member co-chairs. Swint was part of a group from MD Anderson that attended a seminar at the Institute for Patient and Family-Centered Care specifically designed for learning how to create a PFAC.

Swint spoke about patient-centered care in general, explaining that it is really about reducing anxiety and suffering and forming strong relationships with patients.

“When you do that, outcomes improve. It is not enough to write a treatment plan. You have to make sure the patient and family are fully engaged and on the same page. You have to understand what the patients really care about and what their values and needs really are.”

The MD Anderson PFAC has 27 patients and family members and has 10 MD Anderson employees. The Co-chairs report up to Barbara Summers, Chief Nursing Officer and Marshall Hicks, MD, Division Head of Diagnostic Imaging. Summers and Hicks are both Executive Sponsors of the Patient Experience Division at MD Anderson.

The MD Anderson PFAC is currently working on projects involving patient communication and education, including how to get information to patients when and where they need it. They are capturing patient/family stories that teach valuable lessons on what’s important for patients. Swint explained that these stories are a great way to convey to health care professionals patients’ values and needs.

The Council is also working on electronic health record implementation and what is important from the patient’s perspective.

When I asked Swint what the patient and family members that were on the council thought about the initiative, she said that they were extremely enthusiastic.

“Members really want to contribute. If the meeting is running late and we ask who can stay to give feedback, most will willingly stay. This is so important. Just 15 minutes with patients and family members really improves our decision-making; their feedback is so important.”

City of Hope cancer center in California initiated their Patient Family Advisory Council in 2008. In 2012, they also initiated El Concilio, a PFAC for Spanish speaking patients and caregivers. I spoke with PFAC Co-chair, Annette Mercurio, about the council and what it does.

Mercurio explained that the council Chair is always a patient or caregiver and is elected annually. The Co-chair is a hospital employee. The City of Hope PFAC is certainly patient driven, with 22 patient members and 3 hospital employee members.

Some projects that the City of Hope PFAC has been involved with:


  • Several PFAC members sat with City of Hope CMO, COO and other hospital leaders to discuss outpatient care redesign
  • PFAC members contributed to improving after-hours meal options for caregivers
  • PFAC members contributed to strengthening volunteer support for chemotherapy patients
  • PFAC members contributed to the designing of the patient portal
  • PFAC members served on Rapid Improvement Event teams that contributed to process improvements for patient registration, design of the ambulatory surgery center in Amini, specimen transport and chemotherapy patient education

Mercurio told me that the hospital really feels that the council’s help is crucial for tackling any project that involves patients, their families and caregivers. When asked about the patients and caregivers’ thoughts on the council, Mercurio explained,

“The members feel that using their insight will really benefit other patients and caregivers. That helping others by serving on the council is one of the most important ways to make a difference. I am humbled by the dedication of these individuals.”

The emphasis on patient-centered care, patient satisfaction and involvement of patients, their families and caregivers is actively making a difference in healthcare. We at the Patient Empowerment Network hope that it gains momentum as it moves forward. Join the Patient Empowerment movement!