How to deliver more efficient and patient-centered cancer care?
Shannon Boldon, MScResearch consultant, All.Can secretariat
How to deliver more efficient and patient-centered cancer care?8 April 2020
Cancer is the second leading cause of death worldwide. Both its prevalence and cost are increasing, yet there are great inefficiencies in care delivery
The All.Can patient survey gathered data and insights from nearly 4,000 patients and caregivers – importantly representing for the first time the patient perspective of where these inefficiencies in care lie
Many inefficiencies identified by patients in the survey can be addressed today with simple and pre-existing solutions
About All.Can: All.Can is a multistakeholder policy initiative exploring ways in which we can improve the efficiency of cancer care – where we define efficiency as focusing our resources towards achieving outcomes that matter most to patients.
The All.Can patient survey
Cancer is the second leading cause of death worldwide.1 Its increasing complexity and prevalence contribute to it becoming the most expensive disease for many health systems. However, across healthcare, 20% of spending is estimated to be wasted on ineffective interventions.2 Thus, there is an urgent need and opportunity to ensure that cancer care is delivered as efficiently as possible.
If we are to improve delivery of care for cancer patients, we must first understand where the sources of waste and inefficiency occur. Patients are arguably the only people who have a full view of their care experience, so we looked to them to provide these vitally important insights.
The All.Can patient survey took place from 2018-19 and aimed to gather the patients’ perspective on where inefficiencies existed in their own experience of cancer care. Nearly 4,000 patients and their caregivers from over 10 countries shared their experiences with us. All.Can’s definition of efficiency, i.e. focusing resources towards achieving outcomes that matter most to patients, was made explicit to patients who completed the survey. The online survey was approximately 40 open- and closed-ended questions, and we also conducted in-depth interviews in each country to further explore themes that arose from the survey responses.
The findings report “Patient insights on cancer care: opportunities for improving efficiency” was published online in July 2019. Since releasing these findings, All.Can has been connecting with healthcare decision-makers around the world to bring awareness to these insights, and see how they can be used to guide policy development and care planning decisions.
These findings are important for all stakeholders to consider and act upon, including healthcare leaders and executives. By using patient insights to guide care and planning decisions and investments, vast improvements would potentially be seen across many outcomes, including patient experience, quality of life, cost of care, and in some cases – better overall survival.
Four main opportunities to improve cancer care
Overall, we identified four main areas of opportunity to improve the efficiency of cancer care from the patients’ perspective:
- Ensure a swift, accurate and appropriately delivered diagnosis
- Improve information-sharing, support and shared decision-making
- Make integrated multidisciplinary care a reality for all patients
- Address the financial burden of cancer
1. Ensure a swift, accurate and appropriately delivered diagnosis
In the survey, diagnosis was the area where patients felt there was the greatest inefficiency out of all aspects of their care. In particular, patients told us:
- Cancer symptoms were not always recognized immediately
Among respondents whose cancer was diagnosed outside of a screening program, 32% reported that their cancer was diagnosed as something else (initially or multiple times). This varied significantly by cancer type.
- Delays in diagnosis varied considerably by cancer type
For example, nearly 80% of prostate cancer respondents said their cancer was diagnosed in less than a month, while for head and neck cancer respondents this figure was only 25%.
- Delays in diagnosis affected the entire experience of care for patients
For respondents whose cancer was detected outside of a screening program, delayed diagnosis of >6 months was associated with a more negative view of many aspects of care, information and support. Respondents who experienced delays more frequently stated that they were not sufficiently involved in shared decision-making compared to respondents with fewer delays. They were also less clear about signs and symptoms that indicated that their cancer might be recurring or getting worse, and on available peer-support groups.
- The timing and communication of diagnosis also mattered
Some respondents reported a lack of empathy from healthcare professionals, and others commented that healthcare professionals should make sure people are not alone when receiving their diagnosis and are immediately given a point of contact to address any questions that arise.
2. Improve information-sharing, support and shared decision-making
Information, support and shared decision-making was another aspect of care where patients felt there were inefficiencies. Specifically, we found that:
- It was often overwhelming for patients to receive too much information at once about their disease
Some respondents indicated that they would rather be given information at relevant points during their care, rather than being told everything at the point of diagnosis.
- Patients were not always adequately involved in shared decision-making
Only half of respondents (53%) felt they were sufficiently involved in making decisions about their care. Nearly a third (31%) felt they were not given adequate information about their cancer care and treatment in a way that they could understand.
- Respondents wanted more and better support for dealing with ongoing symptoms and side effects of their cancer
Nearly four in ten respondents (39%) felt they had inadequate support to deal with ongoing symptoms and side effects. A third of respondents (31%) felt that they lacked adequate support for dealing with pain.
- Respondents wanted more information on what to expect after the phase of active treatment was over
Over a third of respondents (35%) felt inadequately informed about how to recognize whether their cancer might be recurring or getting worse.
- Respondents said that information on available peer support groups was not always provided
Over two-fifths (41%) of respondents were not given information about available peer-support groups by their care team.
- Gaps in information and support were more prevalent for people with advanced cancers
Specifically, respondents with an advanced cancer reported being less involved in shared decision-making, having less information about their cancer care and treatment, and having less support in dealing with ongoing symptoms and side effects compared to patients with earlier-stage cancers.
3. Make integrated and multidisciplinary care a reality for all patients
Patients told us that they did not always feel that their care was well coordinated, and in some cases, they did not receive the multidisciplinary and supportive care that they needed. Specifically, we found that:
- Patients felt there was sometimes a lack of coordination in their care
For example, they had no written care plan, or a primary point of contact to whom they could ask questions.
- There was also sometimes a lack of communication between different doctors
This was particularly the case in countries with a primary-care-led model e.g. Australia, Canada and the United Kingdom.
- Specialist cancer nurses played an essential role in remedying these communication and coordination gaps
They were able to act as the patient’s ‘navigator’ throughout all phases of care.
- Support from allied health professionals (dietitians, physiotherapists, etc.) was not always available
Nearly a quarter of respondents (24%) wanted to know what role these different professionals could play in aiding their recovery.
- Some respondents commented that palliative care was not discussed with them as an option
THis occurred even when they themselves thought it could be helpful. Those who did have access to comprehensive palliative care services mostly reported great satisfaction with this aspect of care.
- More than two thirds (69%) of respondents said they needed psychological support during or after their treatment
However, of these, 34% said it was not available. A number of respondents said they were concerned for the impact their cancer had on their families and wanted psychological support for them as well.
4. Address the financial burden of cancer
Respondents also spoke of the financial burden of cancer on them and their families. More specifically, we found that:
- Many respondents were shocked by the dramatic financial burden cancer had on their lives
Even in countries with publicly funded healthcare systems, respondents frequently reported having to pay for some of their cancer care themselves.
- In addition to the costs of care, the most frequently reported non-treatment related costs for respondents were travel (36%) and loss of employment income (26%)
Respondents commented that their caregivers also experienced reduced income as they had to assume greater responsibility in caring for a spouse with cancer or taking on greater family responsibilities such as caring for children. In some instances, people had to make huge sacrifices to pay for their care and associated travel.
- The burden of cancer on work – for both respondents and caregivers – often extended far beyond the active phase of treatment
Self-employed respondents and caregivers felt the impact of this most strongly.
- In some cases, a diagnosis of cancer created lifelong financial insecurity
In addition to productivity issues, some respondents had to pay for complementary care not covered by their health insurance or were not able to secure a mortgage or affordable insurance because of their diagnosis. This impact often lasted for many years.
Addressing many inefficiencies in cancer care today is manageable
Many of the gaps in care, or inefficiencies, identified by patients are well-known components of high-quality cancer care. Yet despite this recognition in the literature and care guidelines, patients are still not always receiving the care that they need. Solutions don’t need to be complicated – and they are often already available to us but they need to be implemented more consistently and across all healthcare systems.
What can healthcare system leaders do to help reduce inefficiencies in cancer patient care:
|1.||Implement effective strategies for rapid referral and accurate diagnosis |
Awareness campaigns about the signs and symptoms of cancer, national screening programmes, and/or rapid referral pathways are all strategies that can help. The latter, rapid referral and diagnosis pathways, have been implemented across many countries including Australia, Canada, Denmark, Norway, Sweden and the UK.3-5 These can greatly accelerate the speed of diagnosis and help detect cancer at an early stage where there are greater treatment options and a higher chance of survival. See the Danish rapid referral pathway example.
|2.||Provide patients with easy-to-understand, appropriate information at relevant points along their care journey |
This is the key starting point to help patients feel more in control of their disease, increase overall care satisfaction, reduce anxiety and depression, create realistic expectations of care and encourage engagement in care.6-10 Fulfilling patients’ needs for information is also associated with improved symptom management, treatment adherence, clinical outcomes, and quality of life.7,9,11,12
|3.||Encourage the use of tools that can help facilitate positive doctor–patient communication and information exchange13|
These include patient-reported outcome measures (PROMs), question prompt lists, patient-held records, and tape recordings of consultations.13 Information given during consultations should also be provided in writing, and patients should be encouraged to bring a loved one to these visits to ensure that they have adequate recall of information on diagnosis, cancer care and treatment.
|4.|| Involve patients in the decision-making for their care |
Shared decision-making contributes to better relationships between patients and professionals, and may improve patient outcomes.14,15 Treatment decisions can change after patients become well informed – with many choosing fewer or less aggressive treatments.16 See the UK’s National Health System strategy “No decision about me, without me” – an excellent example of how they are working to make shared decision-making the norm.
|5.|| Assign all cancer patients a key contact person, such as a cancer nurse specialist and/or care coordinator|
This is hugely beneficial in helping patients to navigate their care. This person can help patients navigate all stages of care, as well as offering a more individualized approach to follow-up rather than a one-size-fits-all approach.17
|6.|| Support people to stay in work or return to work following cancer|
This is important as it allows people to maintain a stable income throughout their cancer journey and retain a sense of normalcy.18 In Italy, for example, there is a law allowing patients to switch from full-time to part-time work while undergoing treatment and to go back to full-time work as soon as they’re able to.19 We have also seen the emergence of social enterprises and initiatives to support and provide guidance for patients and survivors to return to work, or help companies set up policies and practices that facilitate this.20,21
|7.|| Proactively collaborate with external stakeholders|
This includes government regulatory bodies, policy and law makers to encourage initiatives that aim to support and protect cancer patients.
The All.Can patient survey findings are not necessarily new, but they importantly represent the first time that patients have told us their view on inefficiencies in cancer care. In order to address the sustainability challenge in healthcare, and to ensure we offer patients the best care possible, we need to take these findings seriously, and act on them as we shape the future of cancer care.
What’s next for All.Can?
We are actively collecting examples of best practice in cancer care on the All.Can Efficiency Hub on our website. You can also submit examples of efficiency in practice to be featured in the hub.
Furthermore, to build on the patient survey work All.Can will be producing a policy paper examining the current and potential role of data in improving efficiency in cancer care. If you are interested in working with us in any capacity, we would love to hear from you. Contact All.Can at firstname.lastname@example.org
Shannon Boldon, MSc worked as part of the All.Can secretariat team from 2017 and led on the All.Can patient survey work while she was a Senior Researcher at the Health Policy Partnership in London (2016-2019). She is currently working as a freelance Health Policy Consultant. She has fieldwork experience organizing and managing global health and development projects in Ghana and Honduras. In 2016, she was part of the Ebola Response team at the World Health Organization in Geneva.
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- Pollock M, Craig R, Chojecki D, et al. 2018. Initiatives to accelerate the diagnostic phase of cancer care: An environmental scan. Edmonton: Institute of Health Economics
- Schmidt I, Thor J, Davidson T, et al. 2018. The national program on standardized cancer care pathways in Sweden: Observations and findings half way through. Health Policy 122(9): 945-48
- Probst HB, Hussain ZB, Andersen O. 2012. Cancer patient pathways in Denmark as a joint effort between bureaucrats, health professionals and politicians—A national Danish project. Health Policy 105(1): 65-70
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- Tokdemir G, Kav S. 2017. The Effect of Structured Education to Patients Receiving Oral Agents for Cancer Treatment on Medication Adherence and Self-efficacy. Asia Pac J Oncol Nurs 4(4): 290-98
- Halbach SM, Ernstmann N, Kowalski C, et al. 2016. Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment. Patient Educ Couns 99(9): 1511-18
- Licqurish SM, Cook OY, Pattuwage LP, et al. 2019. Tools to facilitate communication during physician-patient consultations in cancer care: An overview of systematic reviews. CA Cancer J Clin 0(0): 1-24
- The Health Foundation. 2013. The MAGIC programme: Evaluation. London: The Health Foundation
- Kehl KL, Landrum MB, Arora NK, et al. 2015. Association of Actual and Preferred Decision Roles With Patient-Reported Quality of Care: Shared Decision Making in Cancer Care. JAMA Oncology 1(1): 50-58
- Mulley A, Trimble C, Elwyn G. 2012. Patients’ preferences matter. London: The King’s Fund
- National Cancer Survivorship Initiative (NCSI). 2013. Living with and beyond cancer: taking action to improve outcomes. London: NHS England
- Macmillan Cancer Support. 2015. Cancers hidden price tag: revealing the costs behind the illness. London: Macmillan Cancer Support
- European Society for Medical Oncology (ESMO) and European Cancer Patient Coalition (ECPC). 2017. Survivorship – ESMO Patient Guide Series. Brussels: ECPC
- Working with cancer. 2019. What we do. Available from: https://www.workingwithcancer.co.uk/what-we-do/ [Accessed 13 December]
- Allezi. 2020. Available from: https://alezi.be/fr/accueil/