It was April 1, 2020, when I received a call from a relative of a patient who was just diagnosed with cancer seeking emotional support and asking for instructions about how to deal with the complications after the first chemotherapy cycle. The following week, more messages followed on Twitter asking various questions related to the cancer patient’s journey, as most of the hospitals had suspended routine services during the COVID-19 pandemic. Two remarkable events occurred during this period. One patient’s treatment plan was dramatically affected when she was unable to travel outside of the Southern region for her scheduled chemotherapy session in Riyadh due to COVID-19 restrictions. In another event, a patient was informed that her physician was infected with COVID-19 and unable to treat her. Unfortunately, the patient was not provided with any information as to where to go, who to see, or when to call to receive healthcare. Both of these events are unsafe and could lead to patient harm. It is crucial that we as patient safety leaders acknowledge that adverse patient safety events are still occurring in our healthcare system during these unusual circumstances. Most likely not decreasing, but increasing.
Motaafi, The Cancer Survivor Endowment, recognized a gap in the healthcare system: patients required information and support in their cancer journey but were not sure where to turn during COVID-19. Motaafi is committed to the role of advocacy for both healthcare workers and patients. We believe we are all partners in this world, not only during times of a pandemic but through the entire healthcare journey. Also, our message to all the world is that we (decision-makers and healthcare workers) are human and at any time could be in the position of being a patient. Furthermore, the boat which carries us might be floating or sinking if we do not work together towards achieving the required healthcare goals.
As cancer advocacy leaders, we acted with a fierce urgency to call this safety crisis what it is: a global public health emergency. Moreover, we have no options when it comes to a crisis but to collaborate. During this pandemic, unfortunately, we ascertained that advocacy had not been an easy process for either patients to self- advocate or for family members to advocate for their loved ones. Thus, COVID-19 has exposed weaknesses in our healthcare system, and we can take this opportunity to learn and improve.
To address this situation, Motaafi has developed a long-term advocacy strategy that began on May 8, 2020. The campaign goal was to address the healthcare needs and concerns raised by cancer patients and their families through engagement, empowerment and advocacy. Some of the issues conveyed were access to consultations regarding how to manage chemotherapy, emotional support, recovery and surgery procedures, to name a few.
We initiated the cancer advocacy campaign remotely with the collaboration of stakeholders from governance bodies, healthcare providers from different specialties, patients, relatives, media activists and the community from various countries and backgrounds.
The advocacy strategy addresses the issues of cancer management, recovery, treatment and support by establishing three programs (see figure below, Cancer Advocacy Campaign during COVID-19). First, six electronic visits were offered by psychologists and social workers who provided emotional support, information, examples as to how to break the news and reviewed the stages of the grieving process. The second program provided eleven support group sessions led by oncologists, psychologists, social workers and peers (patients with cancer) focusing on the patient and family cancer journey, such as what to expect and communications. Seven programs for Thursday guest were offered as a third support area, which was co-led by oncologists and cancer survivors, presenting various topics followed by a question and answer session. The sessions provided a wealth of insight and hope. A total of 11,321 people participated, a number well beyond our expectations of 5,000. The level of participation distinctly illustrates there is an appetite, a readiness, a need and the desire of patients and families to be empowered.
This incredible journey to develop the campaign took two months with daily and weekly activities, which would not have come to fruition without the time and efforts of all in the preparation, communication and coordination with a multidisciplinary team for oncology patients. It was well worth it. The extraordinary results showcase three programs that aimed to address the needs of cancer patients and their families. We need to recognize that many other health advocacy groups that belong to non-governmental organizations also made great efforts during COVID-19. Passion was moving us forward. Decision-makers need to use this valuable resource, insights and engage them right now! Never delay it to tomorrow.
It is imperative that government agencies, policymakers, planners and managers, advocacy groups, and consumer and family organizations with their considerable influence as citizens, consumers, regulators and payers use these examples to drive change to move cancer patients' agenda forward. These strategies can be integrated and provided for others, not only for cancer patients and families.
Reducing preventable harm and improving access requires a collective call for advocacy and all of us working collaboratively towards this goal. Policymakers and healthcare leaders must take a leadership role by engaging patients and families as critical stakeholders in co-designing, co-producing, co-assessing and co-delivering such programs within our healthcare systems. In other words, with them, not for them. Empowerment and advocacy are vital to the healing process.
2. Advocacy Heals U Paperback – October 1, 2015, by Joni James Aldrich (Author), Christopher Jerry (Contributor)
Ms. Mecciya Majrashi
Assistant Manager of Patient Empowerment
Motaafi Endowment (Cancer Survivor)
Saudi Patient Safety Center, Riyadh