Delivering care for people with cancer can be complex, involving multiple steps including chemotherapy, radiation and surgery. This can be time-intensive, debilitating for the patient, and require a co-ordinated effort among specialists. The onus is often on patients and their families to decide on the goals of their treatment (for example, prioritising survival time versus improving quality of life).
As the community strives to target the disease with improved treatments and new guidelines, we should not forget, however, to simultaneously work to provide equally innovative care options for its psychological and social consequences on the patient.
By encouraging a change in mindset – away from seeing cancer as an intense battle you either win or lose, to viewing it as a condition that, given the right treatment, can potentially be managed over time – there is much to be gained. By moving beyond traditional clinical outcomes and listening to what it means to be living with the disease, the mindset around cancer can be redeveloped – paving the way for greater empowerment and bringing positivity into a scenario typically mired by fear.
As well as shifting the mindset, significant additional benefit might lie in creating a collaborative, fully patient-centric cancer care ecosystem.
Building the ecosystem
An appropriate cancer care ecosystem should comprise all stakeholders – patients, healthcare professionals, and even payers and regulators. It should also be dynamic, with regular feedback, adaptation and effective co-ordination towards achieving a common goal, or, at the very least, an effective blueprint should be developed that considers both the clinical and the non-clinical needs of patients. Yet the current ecosystem for cancer patients, which tends to overlook patient mindset interventions, proves a significant challenge.
To overcome this, it is important for all stakeholders to remain mindful of the patient’s role in being able to shape and participate in developing better cancer care. There is also a real need to ensure they are well informed and activated, and that they have open channels for communication with an accessible and responsive healthcare system.
Patients and their families should remain the central focus when working to improve cancer care. Therefore, the goals across this ecosystem should be to ensure that patients’ cancer needs are met through improved education, improved quality of and access to care, and improved recognition of the psychosocial complexities they experience.
Involving patients in the development of cancer care plans may be even more important in situations where they are actively participating in making decisions based on dissemination of key data from their cancer care team on what a ‘good’ treatment looks like. This level of involvement should be encouraged from the development stage of a drug right through to its approval, offering patients platforms to help evolve how a treatment is developed and delivered.
Together, stronger
A wide range of healthcare professionals can and should participate in a patient-centric ecosystem of cancer care. These include oncologists, surgeons, primary care doctors, nurses and now – even more so – psychology workers.
With improved collaboration not only between individual members, but also with each of their respective organisations, efforts to monitor, measure and improve the quality of cancer care can be drawn up – a real opportunity for advancing quality of care and developing programmes that may drive progress in public health initiatives and patient safety.
Correctly recognising what a patient needs and knowing when to deliver it, meanwhile, gives the ecosystem the opportunity to prioritise collaboration in pursuit of a shared goal: delivering the best possible level of care and support to patients.
The ecosystem could work together to increase access to diagnosis, screening and improve accessibility of high-quality medicines, for example. But it could also enhance community and patient knowledge of cancer across a broad range of other topics – including quality of life benefits and nutrition – and engage more specialised doctors to talk about non-traditional goals.
Such opportunities should also be used to ensure patients focus on ‘silver lining’ areas – those that are functioning well – rather than the sickness itself. Empowering patients to shift their mindset towards what’s achievable could completely alter their cancer experience, research shows.
Reframing a patient’s perspective may help to foster renewed appreciation for life, inspire personal growth and motivate lifestyle changes – such as eating more healthily and getting more exercise. However, whilst significant improvements have been made in cancer survival it can still be tough to truly reassure patients, as there is always some risk a cancer could return.
Every person in the cancer care ecosystem therefore has an important role in reshaping and better supporting each patient’s experience of their cancer. Greater collaboration and communication across this ecosystem is needed to improve the creation and dissemination of key knowledge, and encourage a mindset shift for the good of all patients.
The role of the pharma company
Pharma companies are important to the cancer care ecosystem and how information is disseminated to those who need it. In the past, patients were just recipients of information. Today, however, patients are better informed and to treat them as passive recipients is no longer appropriate.
In a recent study, 63% of patients and caregivers expressed a willingness to share daily symptoms with pharma companies. This demonstrates a real opportunity for patients to become partners in information creation, and for companies to improve their patient outreach and collaborate to co-create content. This exchange of information should focus on stimulating behavioural changes that improve outcomes, both clinical and non-clinical.
Increasingly, the behaviour and expectations of patients, industry and, indeed, the entire ecosystem, will be shaped by technological advances such as: use of mobile devices, remote data access, availability of real-time information and social media.
As this two-way patient/industry conversation evolves, oncology pharma teams could think about developing novel digital health initiatives, medical education materials and internal training programmes that increase understanding of the nuances of patient-centric cancer care. Patient profiles could be used to educate physicians on where in a patient’s journey they could introduce a new breast cancer treatment, for example. Virtual exchange platforms could unite disease area experts to discuss patient-centred outcomes. Even developing scientific narratives that change the way stakeholders look at a patient’s quality of life can help to adopt positive change.
Already, pharma companies are working to build stronger relationships with patients, physicians and care centres by improving digital support. Recent initiatives have focused on patients’ real-world health data to create a comprehensive database that accelerates drug development and improves understanding of patient-important outcomes amongst the community.
Other digital health solutions, meanwhile, are now focusing on patients’ clinical, lifestyle and psychosocial needs, while also addressing factors such as access to transportation to reach speciality treatments. When patients in an astute ecosystem start reporting changes in certain symptoms or challenges they face, appropriate personalised healthcare solutions/interventions could be developed.
As patient-centricity becomes the benchmark of success, pharma teams must look towards ways of collaborating with members of the ecosystem to recognise and more effectively advocate for patients’ needs. Once this happens, patients may have a greater opportunity to assess results with their doctors, make their own judgements, and decide where to seek treatment – all as a result of a cultural shift in in the way cancer is viewed and managed.
Kulveer Singh is principal medical writer at Axiom, a division of The Creative Engagement Group
