At the third Biennial World Summit of Brain Tumour Patient Advocates on 19–22 October 2017, run by the International Brain Tumour Alliance (IBTA), All.Can held a masterclass with 90 brain tumour patient advocates, patients and carers from around the world. The goal of the masterclass was to get a better understanding of patient perceptions on waste and inefficiency in brain tumour care, and to see how our work can best serve patients and their families.
The following themes were uncovered from the participants’ responses:
A lack of expert knowledge at the primary care level
A lack of knowledge on a general practitioner’s part can sometimes lead to underdiagnosis or misdiagnoses of brain tumours. Under- or misdiagnoses use up services unnecessarily, waste time (for healthcare professionals, patients and carers alike) and can be detrimental to a patient’s mental health.
Therefore, more specialised education is required for GPs, and also for those in the emergency/urgent care units, to increase the number of true positive diagnoses of brain tumours. Checklists and decision trees were suggested as solutions and tools to help GPs streamline the process and ensure appropriate and rapid referrals.
Throughout all stages of care, poor communication can affect the doctor–patient relationship. This communication may be hindered by:
- a lack of knowledge from the patient about which symptoms to report
- a reluctance from the patient to report symptoms or ask for a preferred treatment
- the imbalance in specialist knowledge between a doctor and a patient, which may result in a doctor using terminology that the patient is unfamiliar with, leaving the patient dissatisfied and unempowered to speak about their illness
- a culture in which ‘the doctor knows more’, resulting in doctor–patient interaction being dictated more by respect for the doctor than by respect for the patient’s wishes.
To restore the balance and ensure better communication throughout all patient–doctor interactions, it was proposed that training for GPs would help them to:
- develop skills in demonstrating empathy and engage in active listening
- explain medical jargon in simple terms
- encourage the patient to talk and explore their ideas about their illness and possible treatments.
- Having an advocate present in hospitals would also provide an emotional support system, as well as a source of information for patients and their families.
Duplication, fragmentation and wasted time
Care happens at home, in hospitals, in hospices and in a variety of other environments. Therefore, when a patient is diagnosed with cancer, they will engage with many different healthcare professionals. The fragmentation of healthcare systems creates a disconnect between professionals and the patient, and an inefficient system to share information between them.
Expanding the traditional understanding of which professionals are involved in brain tumour care and providing them with an efficient system to share information among themselves will reduce fragmentation in cancer care. For example, social workers are not always seen as part of the traditional cancer care system and so are often not considered when sharing information. The introduction of a brain tumour care coordinator may be helpful, and may ultimately reduce the amount of time wasted in the care pathway.
Patient time and attendance
There is a worry that patients cannot always attend appointments due to restricted travel, either because of their location or their illness.
Providers should consider introducing a ‘patient portal’ and utilise technology and innovation to allow patients to connect with their doctors via telecommunication when they do not need to be seen physically. Such a portal has been established in Canada, where patients are able to access online information about wait times, getting faster access to diagnostic testing. It has been suggested that it may be useful during the follow-up process when patients simply need to document their symptoms. This may remedy the number of appointments missed and help those patients who are unable to travel for appointments.
Underuse of palliative care
Palliative care can play a significant role in brain tumour care, but it is currently underused. This is mainly due to a misunderstanding of what palliative care is. Common perceptions of palliative care paint it as a ‘last resort’ or ‘care for the dying’, implying a loss of hope – rather than treatment and care that is focused on improving patients’ quality of life. There is simply not enough awareness of palliative care, its benefits and its availability. As a result, it is not being introduced early enough in the care pathway.
The general perception of palliative care needs to change to a definition of ‘supportive care’ that can help patients manage symptoms at any stage of the care pathway, and is not reserved for the dying. Information about what options exist for patients should be made more widely available. It may also be helpful to put in place a palliative care coordinator who can be a part of the care pathway from the start, so the patient is always aware that palliative care is an option.
This masterclass was a pilot for All.Can, in which we tested the findings from our precursory research and asked a specific community of cancer patients what mattered most to them when looking at how to improve the efficiency of their care. We hope to repeat this masterclass with other communities of cancer patients –these discussions may be helpful to All.Can and to patients, as they think about what could be done to improve the efficiency of their care within their particular context.
One patient said to All.Can, ‘Rather than asking what you can do for us, you should be asking what we can do for you.’ Patients know more about their care than any other stakeholder – and hearing directly from them what we can do to improve care is not only important, it’s essential.
We are always looking to collaborate and form partnerships with patient organisations, and ensure the work we do can help patients with all types of cancer find ways to improve their care. If you are interested in finding out more about All.Can, please get in touch.