Gareth Presch is Founder and CEO of World Health Innovation Summit (WHIS). As part of his work he curates WHISTalks sharing a variety of topics to reach a global audience on various themes. He invited Dr. Minas Chrysopoulo, Founder of the Breast Advocate app, and me to the program for an interview. The video can be viewed in this blog. Here is a summary and highlights of our WHISTalks Live on shared decision-making.
The Importance of the Patient Voice in Shared Decision Making
Dr. Chrysopoulo mentions that shared decision making provides opportunity across a variety of health specialties for patients to have a voice in their health care decisions. He points out that in breast cancer 40% of patients do not feel they have had a voice in their treatment decision making. In breast reconstruction 57% of patients do not feel they make a high-quality decision as they define it. Dr. C states, “Shared decision-making is really standard of care, but unfortunately it is not standard practice.”
Where do opportunities lie to implement shared decision-making to improve patient safety and outcomes in healthcare?
Gareth’s background is in health services. He had past opportunities to work in a unique setting involving patients, clinicians, managers, volunteers, education, and the wider community in the health sector. Because of this positive experience, he acknowledges he thought this is how the system worked. However, he realized that outside of this experience he found few situations where the patient has a say in their decisions.
Gareth sees a paradigm shift in the coming months, driven by the current COVID crisis, and the impact it will have on global healthcare. The work Dr. C is doing along with the support offered by communities has the potential to bring patients, clinicians, education, managers, and health industry together to encourage shared decision making with the very real goal of improving patient outcomes.
We continue the conversation with a discussion on the resources available to all of us as a community. In the world of breast cancer and breast reconstruction it begins by sitting at the table together and sharing dialogue, ideas, and consciously listening to each other to improve outcomes for patients and practices for surgeons. Mutual respect has to be part of this dialogue just as it is in shared decision making in online communities and forums.
Gareth asks about the power of patient engagement. Dr. C says patient engagement is a previously undefined but very important cog in the wheel. He continues by pointing out support structures are crucial to getting through all sorts of health issues. With or without support from family or friends, connecting with those who have personally been through breast cancer can be a crucial part of a patient’s Journey in understanding the process through breast cancer and breast reconstruction.
Shared decision-making is marrying the expertise and evidence-based information from the surgeon with patient values and preferences. This process does not imply the patient decides the treatment. There are various forms of patient autonomy, the degree of involvement the patient wants. Some patients are keen on having the surgeon make the decision based on their expertise. Others bring information to the consult from resources they haven’t historically had access to.
Resources and Decision Aids
Collaboration based on solid evidence-based information and surgical options and treatment from experts in the field gives patients the information they need to feel confident in their decision. This is information we strive to provide at DiepCFoundation, and it certainly is the basis of the the breast cancer surgery decision aid, Breast Advocate, Dr. Chrysopoulo developed for those affected by breast cancer. Open access journals allow the opportunity to read evidence-based articles and to understand and discuss them with their health care team. As patients, we now have the ability to access them online or through tools like the Breast Advocate app.
A breast cancer diagnosis often feels like a medical emergency when in most instances, a patient can take time needed to step away from the shock of the diagnosis and absorb the resources and information now available. Being prepared by doing this research when you go to your medical consult sets the patient up for a shared decision-making conversation.
Challenging the Stigma of a Cancer Diagnosis and Incorporating Shared Decision-Making
Gareth mentions cancer can create a stigma for those diagnosed. People are diagnosed and the difficult conversation is not often spoken about among family or friends. The lack of conversation and in particular the lack of information can lead people to feel a cancer diagnosis means death. He presents a challenge we can all embrace. During a diagnosis, more than ever, people need support.
Talk about what cancer is. Have the conversation to understand what the science says about survival, innovations in treatment and surgery, and what the patient can do to return to life after a diagnosis or living with metastatic disease. This is empowerment for the patient, family, friends, and support group for those affected by cancer. Utilizing resources can help break the stigma of cancer.
What Does the Future Hold?
COVID has had an impact on our health care system. Patient engagement will continue to change because of this. Putting the power of information and education into the hands of patients will help alleviate the challenges we will face. This is the very heart of SDG3, good health and well-being, as Gareth points out. Can we focus on those who are lacking the information now?
The need for information is vast and will only ramp up over the next months as we deal with the challenges brought on by COVID. Disrupting our current thinking and asking industry to acknowledge there are issues to access of information is paramount. Invite them to the conversation along with patients, healthcare professionals, educators, and volunteers to create actionable solutions to improve patient safety and outcomes.
Gareth believes we have the resources to “rise to the occasion”. I feel very strongly about this, too, but it will not happen with conversation only. The need for action is now. I am grateful to have the opportunity to discuss this with Gareth and Dr. C.