Monthly Archives: February 2021

1School of Health Sciences, University of Notre Dame Australia, Fremantle, Western Australia, Australia; 2Telethon Kids Institute, Centre for Child Health Research, The University of Western Australia, Nedlands, Western Australia, Australia; 3Institute for Health Research, University of Notre Dame Australia, Fremantle, Western Australia, Australia; 4Division of Obstetrics and Gynecology, Faculty of Health and Medical Sciences, University of Western Australia, Perth, Western Australia, Australia

Correspondence: Sharolin BobanSchool of Health Sciences, University of Notre Dame Australia, Fremantle, Western Australia, AustraliaEmail 32009365@my.nd.edu.au

Purpose: By directly engaging with women diagnosed with ovarian cancer, this study aimed to explore and identify their view of the health symptoms and outcomes that matter most to them as they traverse their disease pathway.Background: Patient-reported outcome measures in ovarian cancer have tended to focus on physical symptoms rather than the more complex psychosocial aspects of living with the disease. Using a ground-up approach, this study sought to comprehensively understand the health concerns that matter most to women with ovarian cancer as a first step in generating items for development into an ovarian cancerspecific patient-reported outcome measure.Patients and Methods: Following an extensive literature review, we sought to capture the patient voice through a qualitative descriptive approach including a community conversation with ovarian cancer patients, their carers and clinicians, and interviews and focus groups with women with ovarian cancer. Thirteen women were interviewed individually, and two focus groups were conducted. A template thematic analysis was used to analyze the data.Results: Key themes included challenges related to clinical diagnosis, treatment phase, altered relationships with family/friends, financial issues, relationships with health professionals and coping strategies. Within each key theme, several sub-themes emerged that were identified as various challenges experienced by participants. Diagnostic delay, chemotherapy and surgery-related challenges, negative impact of sexual well-being on partner relationship, communicational challenges with health professionals were among the few issues identified. In addition, self-empowerment was identified as a coping mechanism among participants.Conclusion: By identifying priorities for women diagnosed with ovarian cancer we have highlighted the need for strategies to reduce diagnostic delays and improve quality of life for these women. Data will inform the development of an ovarian cancerspecific patient-reported outcome measure.

Keywords: focus groups, health-related quality of life, qualitative descriptive, patient-reported outcome measures, semi-structured interviews

Ovarian cancer (OC) affects women of all ages but is most commonly diagnosed after menopause. More than 75% of affected women are diagnosed at an advanced stage because early-stage disease is usually asymptomatic, and symptoms of late-stage disease are nonspecific. The strongest risk factors are advancing age and family history of ovarian and breast cancer.1 Currently there is no effective population-level screening test for OC.2,3 Treatment usually involves radical surgery and chemotherapy with subsequent lines of chemotherapy for disease recurrence.4 Treatments can impair health-related quality of life (HRQOL), a concept that pertains to general well-being or outcomes surrounding a specific disease.5,6

Over the previous two decades, patients have had increasing roles in providing information and participating in clinical decisions for managing their cancer. Structured patient provided information without clinician modification and/or interpretation is termed a patient-reported outcome measure (PROM).7 PROMs can be either generic tools such as the hospital anxiety and depression scale or disease-specific tools designed for specific groups of patients such as those with gynecologic cancers.8 Patient involvement has a profound impact on PROM development as it is only the patients who can determine item relevance and comprehensibility of the tool.9,10

Currently, four validated OC specific PROMs have been developed to measure HRQOL of the patients: The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire of Cancer Patients Ovarian Cancer module (EORTC QLQ-OV28), Functional Assessment of Cancer Therapy Ovarian Cancer (FACT-O), FACT Ovarian Symptom Index (FOSI) and Measure of Ovarian Symptoms and Treatment Concerns (MOST).1113 However, these tools do not identify all aspects of HRQOL and differences exist in the level of patient involvement in the development of these PROMs, which is vital for PROM development.14

This study is affiliated with an overarching project, Patients First: Continuous Improvement in Care-Cancer (CIC Cancer), that aims to develop an OC PROM to measure HRQOL, through a ground-up approach that includes meaningful patient involvement. As an initial step, this phase of the study involved the collection and analysis of qualitative data to inform the subsequent generation of items necessary for the development of an ovarian cancerspecific HRQOL tool.

Based on an extensive literature review and assessment of the content of existing cancer PROMs, this study utilized a qualitative descriptive approach. A qualitative descriptive approach enables the researcher to obtain comprehensive details of personal events as experienced by individuals and is appropriate for health science researchers as it provides rich and descriptive information from the participants perspective.15 This study employed a community conversation for women with OC, their carers and a clinician (PAC) to shape the subsequent semi-structured interviews and focus groups.

Purposive sampling (non-probability) using a maximum variation sampling strategy was used to identify participants. Purposive sampling enables the researcher to intentionally select participants who have in-depth personal knowledge of the topic which will contribute to the study in alignment with the research aims.16 The participant inclusion criteria were women diagnosed with OC aged above 18 years, who were living in Western Australia and fluent in English. Carers of participants were also invited to participate in the study. Participants were recruited at various time-points from their diagnosis.17

Community conversation, interview and focus group participants were recruited through an advertisement distributed through the media and relevant agencies including Cancer Council Western Australia (CCWA) and Ovarian Cancer Australia (OCA). Interested participants were asked to contact the researcher(s) and/or CCWA & OCA directly. Thereafter, the participants were contacted by the researchers (CB, SB) who provided them with the choice to participate in either interviews or focus groups. Details of date and time along with venue for the community conversations, interviews and focus groups were sent out by e-mails to participants through both the CCWA member database and the OCA networks along with the CCWA regional support coordinator. The initial community conversation facilitated by a qualitative research expert (CB) was held with 15 women with OC (different to those who participated in the interview and focus groups), two consumer advocates, and a gynecologist with experience in gynecological oncology (PAC) to explore some of the key issues of personal importance to key stakeholder groups.

Ethics approval for this study was granted by the Human Research Ethics Committee at University of Notre Dame Australia (018158F) and conforms to Australian 2018 Update of the National Statement on Ethical Conduct in Human Research. The participant information sheet and consent form were provided to participants and the signed consent form was obtained from the participants prior to data collection. All participants provided consent for their de-identified data to be published. Guided by the literature review and the field notes during community conversation, similar question formats were formulated for both interviews and focus groups, Figure 1. In addition, our study processes complied with the Declaration of Helsinki.

Figure 1 Question format used during semi-structured telephone interviews and focus groups.

Along with the qualitative research expert, the student researcher (SB) independently conducted individual telephone interviews of approximately 30 minutes duration with 13 OC patients at their place of convenience. The research team (CB, SB) then conducted two focus groups in metropolitan Perth, Western Australia. A total of 13 participants attended one of the two focus groups, each lasting approximately 90 minutes, with participation of three carers in the second focus group. Participants varied in their age. Most participants were employed and were married/defacto. Four participants were over 5 years since diagnosis, but one participant had received a diagnosis less than 6 months at the time of the interview. Disease status of the participants at the time of the interview was obtained. Six participants were undergoing active treatment, with a completion of at least two full cycles of chemotherapy. The remaining participants confirmed that they were in remission or awaiting treatment. The number of cases of OC in Western Australia is small compared to some other cancers (eg breast, prostate) and it was important to recruit as many women with OC across the disease trajectory as possible. Thus, the focus of this study was the importance of the different experiences of the participants.

Data saturation was achieved, and collected data were audio-recorded and transcribed verbatim by the student researcher (SB). Template thematic analysis was performed which included open and axial coding using the qualitative data management program, QSR NVivo (version 12), Figure 2.18 Template analysis is defined as a method for identifying, analysing19 and reporting themes in the data based on the task question format. It enables the researcher to identify emerging themes in understanding a phenomenon or event.20,21 Key themes identified were categorized as core themes and further emerging themes then became the categorical sub-themes for analysis.

Figure 2 Stages of qualitative analysis process: an illustration.

Member checking also included sending the summary of coding and themes back to four participants who had indicated that they were willing to receive this summary via the CCWA and OCA support group coordinators.

Six key themes emerged regarding various aspects of illness and treatment experiences described by the women and their carers (Figure 3). Within each key theme, several sub-themes and relative sub-themes emerged that were identified as various challenges experienced by participants as detailed below.

Figure 3 Representation of key themes emerged from interviews and focus groups.

Four factors were identified in relation to the symptomatic presentation pertaining to the disease and are shown in Table 1. Participants experienced pre-diagnostic symptoms including abdominal/bowel discomfort and pain, urinary urgency, fatigue, weight gain, abnormal menstrual bleeding and/or menopausal symptoms. Lack of awareness of disease symptoms by both patients and health professionals (HPs) was a related issue. Due to work and family commitments, several participants intentionally ignored their symptoms. In further, majority of the participants expressed diagnostic delay as another challenge faced during their clinical diagnosis phase.

Table 1 Percentage of Participants with Symptoms and Presentation

Challenges related to receiving treatments were highlighted with at least half of the participants feeling vulnerable at times since receiving their diagnosis. Most of the participants were challenged by side-effects. Fatigue, nausea, neuropathy, memory loss and loss of appetite were the most common side-effects identified, with less common side-effects such as mucositis and organ failure also described. Support of family and friends provided strength for the majority of the participants. Some women indicated having to modify their usual diet, lifestyle and physical activity during treatment. Activities such as meditation, cycling, gardening and yoga helped them cope during and after treatment. However, some participants also mentioned how empowering themselves during treatment was vital. Maintaining and having a relaxed mind, a positive attitude and a sense of humor were practiced by a few, despite the situations they were facing at that time.

Another participant spoke of how she had lost the chance of experiencing motherhood. Rurally located participants faced further travel challenges of time and distance. And furthermore, two participants highlighted the issues around having lack of treatment options while travelling, either it be a rural destination or an interstate travel.

Other key themes related to living with a diagnosis of OC across the disease trajectory.

All participants agreed that relationships with their family and friends influenced their lives. Some participants spoke of experiencing lack of support with unpredictable reactions and withdrawal of family and/or friends. Other participants spoke of being avoided and noticed that people around them react differently which then created emotional reactions such as upset and insecurity. Furthermore, sexual relations and a changed level of intimacy with a partner/spouse were identified as an important subtheme in their lives. Many participants described how a lack of intimacy had put pressure on their partner/spouse relationship and affected their emotional well-being. A few participants described their sexual relationship as non-existent and that a counsellor had been consulted.

Most of the participants agreed and acknowledged having support from family and/or friends had a profound impact on their lives. A positive relationship with close family boosted their journey particularly following the diagnosis and during treatment. Participants described drawing strength and emotional support, and an increased interpersonal relationship bond with family and friends.

Almost all participants reported having financial issues such as out-of-pocket expenses for scans, surgery and other practical issues including hospital parking and medication costs. Several participants reported lack of information about accessing health services. Some mentioned the financial toxicity associated with their illness and that they lacked knowledge of how to access support services such as paying the bills without going into debt and having to access their superannuation funds for urgent and necessary expenses.

I guess it was not even initially when I wasnt told about certain things I could access like my super. I had to find out I think two years down the track or something. So it wasnt, nobody even gave me that sort of information.

Some participants had to stop work during treatment and others had to reduce their workload to cope with the challenges and issues faced during their clinical journey.

Participants spoke of their relationships and experiences with their respective HPs. In general, most participants acknowledged having a positive relation with HPs including general practitioners (GPs), gynecological oncology and medical oncology providers in terms of the support and medical treatment provided to them. The advice received by the oncology team was described by one participant as absolutely phenomenal (they) answered any questions with patience and understanding.

Meanwhile, some participants spoke of a perceived negative relationship with their HPs. Overall, many participants felt there were communication gaps in the healthcare system, particularly during treatment, and participants experienced various forms of communication challenges either with or between oncologists and GPs and specialist departments.

Because of my complex medical problem, Ive been out for a few months affected by surgery and by several treatments. So, I found that (hospitals) communication between the different departments just wasnt there.

Furthermore, issues around clinician lack of empathy and compassion, and providing inconsistent information about prognosis negatively impacted the emotional well-being of many participants. A majority had a less than satisfactory relationship with GPs. Half of the participants described the excessive length of time for their symptoms to be investigated leading to a delay in their diagnosis. Some perceived being ignored or that GPs were pretty dismissive about their symptoms thinking they were due to a urinary tract infection or perimenopause and no further action was taken. Furthermore, participants mentioned having difficulties requesting tests such as ultrasound scans and pressed for these.

Insufficient provision of information was one of the key issues in relation to treatment and participants complained that oncologists, did not fully explain the side effects of the prescribed medications. Some participants also reported a lack of involvement in decisions about their treatment and not being provided with treatment options including at disease recurrence.

Participants were asked to share their experiences on how they coped with difficult situations through their clinical journey. They described support from family and friends, lifestyle and physical activity assisted them to cope with difficult situations and kept them moving forward. Walking, listening to music, meditation, nutrition and crafts were some examples. Two participants mentioned how making time for themselves was important for both their mind and body. Several participants sought help from support group organisations through which telephone support services, information booklets and complementary services such as yoga were provided.

Some participants emphasized that taking control of their own lives was their one main strength. Identified factors were being able to look forward, having an attitude of not giving up and learning how to stick up for oneself. Participants expressed that by being independent and knowing their innermost selves provided them motivation and strength throughout their lives. In addition, providing self-encouragement through positive attitude and feeling gratitude helped them.

I do need and want to practice gratitude every day. I am grateful for what Ive got. And Im much more in tune with the little things in life.

Further to this, having a strong spiritual belief system helped to calm them and became a source of comfort explicitly during chemotherapy. In addition, having spiritual belief helped not only the participants but also their families to gain strength in order to cope with difficult situations.

In this study women with OC were able to express their own voices based on their individual experiences. Therefore, the six themes identified describe both HRQOL and contextual themes. Post diagnosis and treatment-related issues, relationships and supports with family and friends, financial issues, relationships with healthcare providers and self-perceived coping strategies were the key themes identified. Each theme had a number of overlapping sub-themes that were identified as priorities for the women. In particular, challenges related to relationships, financial issues, relationships with health-care providers and coping strategies were experienced during and after diagnosis and treatment.

Diagnostic delay was a key concern and our data suggested that lack of early symptom awareness due to insufficient OC knowledge and symptom recognition by participants and HPs contributed to the delay. This is consistent with studies that have low levels of OC symptom awareness are associated with delayed diagnosis.2224 While, lack of cancer detection and inexpedient referral patterns influenced incorrect diagnosis by the physicians,25 and greater public education to increase knowledge of disease symptoms could be helpful.26,27

Most participants received a combination of surgery and chemotherapy. Treatments adversely affected physical well-being with prevalent symptoms such as fatigue, nausea and neuropathy. Research is now focusing on symptom management interventions guided by the implementation of PROMs into clinical settings and trials.5,28,29 Several surgery-related outcomes including change in body image, premature and sudden onset of menopause, and loss of reproductive function may affect psychological well-being.30 The possible loss of fertility during treatment with cancer can be more distressing than cancer itself, according to recent reports where efforts to maintain fertility through techniques such as fertility-sparing surgery are essential in younger women diagnosed with gynecological cancers as they could lead to an improvement in quality of life.31 Another recent study indicated high levels of psychological distress when diagnosed women reach childbearing age as menstrual function and fertility were lost. It is therefore important to monitor the progression of cancer but should also provide appropriate fertility preservation counselling. This has potential to alleviate stress, anxiety and depression and a smaller negative effect on the quality of life.32 Consistent with our findings, a past study showed that those who underwent surgery have experienced psychological distress such as lack of self-esteem, self-worth and loss of femininity.33,34

Survivorship is important in cancer care and recent improvements in treatment have resulted in an increased number of survivors.35 However, our findings highlighted the need for patient-centered care. Patient involvement is vital in clinical care, where a recent study pointed to the significance of patientclinician communication. This communication style provides patients with the platform to raise and discuss issues with clinicians thereby shaping subsequent clinical care processes and outcomes.36

One of the contextual themes of HRQOL identified was perceived lack of provision of adequate information and services. Studies show that educating and communicating patients and their families regarding treatment options and their underlying side-effects will prepare patients to realize the likely outcome of treatment and will assist them in facing upcoming challenges.30,37 Inadequate services such as counselling were identified. Studies show that psychological and other supports are essential in these womens lives, focusing on psychological well-being as well as counselling related to financial and nutritional needs.30,38

Further, our findings illustrated some communication gaps between the women and their health-care providers. Research shows that engagement of patients with their health-care team strengthens and increases the provision of patient-centered care and thus potentially aids cancer control.39 A 2013 study described that patientclinician communication may assist adherence and agreement to treatment, where, for example, two-way communication on treatment-based symptoms could aid in symptom management.40 A recent study that focused on the sexual function of women diagnosed with OC reported that not only was there a communication gap between patient and clinicians, the clinicians expected patients to have disease-related sexual problems and waited until patients spoke about their concerns.41 Improving survival, functional recovery and quality of life while minimizing long-term side-effects are key priorities in cancer care.

Social well-being is consistent with the concept of HRQOL. The importance of being supported by family and friends, especially partners/spouses, was a critical factor for well-being. Some participants experienced changes in their relationships. Time spent with family was reduced due to treatment demands and withdrawal of loved ones from them. Previous studies have reported that women have felt displeasure from their friends and were unwilling to discuss about the disease.37

Overall, participants experienced highly compromised HRQOL, around the time of diagnosis and during treatment. There is an urgent need to develop new strategies for early detection and screening,3 as diagnostic delay was associated with psychological distress such as anxiety, fear of death, parental stress and uncertainty in the current study and has also been previously reported.37 Additionally, participants experienced challenge in obtaining appropriate information to access and benefit from the healthcare system post diagnosis. Multiple studies have found that unreliable provision of knowledge and information is a driver of poor medical care in many high-income countries, including Australia.42 Involvement of patients in decision-making and public engagement could improve the evidence-based value of their health care43

Emotional domain is another aspect of HRQOL. Emotional distress was experienced particularly during treatment phase. Fear of recurrence was a source of emotional distress. Previous studies related to gynecological and OC research show that women have fear of disease recurrence during the treatment and post-treatment phases and that these fears are poorly understood.44,45 Frustration was also of concern with almost all women frustrated due to their treatment side-effects and symptoms. A 2020 qualitative study that investigated the life experiences of women diagnosed with OC found similar results on how women fall into frustration following treatment completion.46

Understanding and measuring HRQOL outcomes related to the sexual well-being of women diagnosed with OC is vital. Half of the participants had poorer sexual function impacting their overall health and well-being. Changes to body image, sudden onset of menopause, infertility and lack of intimacy were identified and negatively impact emotional well-being with a sense of losing feminine identity. It has also been found that difficulties with body image and lack of intimacy are associated with impaired quality of life.41

Not only do individuals diagnosed with cancer have detrimental impacts on their sexual functioning, it often influences their partners. Studies suggest that cancer partners may suffer equal or even higher levels of distress relative to their sick spouses. Partners of cancer survivors do not often have the resources to offer sufficient care to their female partners.47 Findings from a 2009 study indicate that the sexual perceptions of the partners were influenced by loss of interest in the individual with cancer and tension and fatigue correlated with care tasks. Carers agreed that reduced happiness with the partnership could be followed by poorer quality of life as well as higher levels of anxiety and depression.48

Financial aspects were described, and this influenced participant wellbeing. Due to the amount of time required to spend in treatments, some participants had lost their income stability either due to change to their employment status or being unable to continue in the workforce, impairing their emotional well-being and overall HRQOL.49 Some issues might appear to be more minor, such as related to the lack of car parking availability at respective clinical settings, but when needed on multiple occasions, this was a more major concern. Studies in women with OC found that disease and treatment-related burdens create several issues including social and financial effects on their lives.38,50

Participants also described current strategies they used in daily life. Participants utilized numerous coping strategies such as modified diet and lifestyle, which could be considered as a contextual factor that could influence HRQOL. Family and friend support was another major help sought by these women, which in turn helped improve and maintain their quality of life.51 Self-empowerment techniques such as ability to look to the future, having positive attitude and sense of humor were a few techniques employed by the participants. Recent studies also show similar coping strategies used by women and how changed views and adding humor to their personal experiences was a means of self-healing.52,53 Overall, the participants were able to maintain their HRQOL and continue a modified normal life with the implementation of various strategies and self-management techniques into their lives.54

There are approximately 115 new diagnoses of OC per year in Western Australia,55 potentially compromising data collection using a small sample size. However, maximum variability and data saturation were achieved using small sample size56 and thus should not be considered as a limitation but a strength. While the study sought to explore patient outcomes across the clinical trajectory, participants might not have accurately recalled their perspectives, constituting another limitation.

Moreover, rich and descriptive data were obtained using the qualitative methods,57 where intentionality of the participants and their carers were explored. In addition, utilizing a qualitative approach has enabled a holistic understanding of patients and carers lived experiences. The bottom-up approach of involving patients from commencement and throughout the study will ensure that going forward, priorities are clearly identified by the consumers (women with OC themselves) in consultation with clinicians. We envisage that the proposed OC specific PROM to be developed in a future study would be used in clinical settings to identify and measure specific problems that patients encounter that needed to be discussed.

By identifying key priorities for women with OC using a ground-up community-based approach, we have highlighted the need for strategies to reduce diagnostic delays, assist patients in navigating the healthcare system, and improve their HRQOL and potentially develop a OC specific PROM that will enable better identification and earlier treatment of symptoms during the entire course of the disease.

CCWA, Cancer Council Western Australia; CIC Cancer Project, Continuous Improvement in Care-Cancer Project; GPs, general practitioners; HPs, health professionals; HRQOL, health-related quality of life; OC, ovarian cancer; OCA, Ovarian Cancer Australia; PROMs, patient-reported outcome measures.

We are thankful for the generous involvement of participants, and their carers for sharing their experiences with us.

All authors made significant contributions to the study conception and design, execution, performance of the research, data acquisition, analysis and interpretation of data, took part in drafting the article or revising it critically for important intellectual content; agreed to submit to the current journal; gave final approval of the version to be published; and agree to be accountable for all aspects of the work.

This work was carried out with the support of a Grant provided by the Cancer Research Trust and is part of the CIC Cancer Project, a multi-institutional program of research that seeks to bring value-based health care public and private health-care settings in Western Australia.

Paul Cohen reports personal fees from Seqirus, outside the submitted work. The authors report no other potential conflicts of interest in this work.

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See the article here:

[Full text] Women Diagnosed with Ovarian Cancer: Patient and Carer Experiences and | PROM - Dove Medical Press

In his new book, How to Avoid a Climate Disaster, Bill Gates argues that there are really only two data points that matter when it comes to tackling humankinds existential challenge: 51 billion and zero. The first is the number of tonnes of greenhouse gases that are typically added to the atmosphere every year. The second is the number we need to arrive at to avoid catastrophe.

While acknowledging that the challenge is daunting, and how we make things, grow things, move around, keep cool and stay warm will all need to fundamentally change, Gates argues that wholesale transformation is possible while maintaining lifestyles in high income countries and continuing to lift billions out of poverty. And he has a plan.

He employs the concept of the green premium. Carbon remains cheaper as a source of energy because its negative impacts or externalities arent priced in. Governments subsidise fossil fuels because they are reliable and proven. The green premium is the additional cost of using a green alternative. In some instances such as producing electricity using wind turbines or solar energy it can be zero, depending on the country. In other sectors, such as concrete, fertiliser or steel production, its enough to deter the use of clean alternatives. While wealthy countries might be able to pay a premium for these zero carbon options, that isnt currently possible for some fast-growing nations in Asia, Africa and South America. The green premium needs to be so low as to make sense to switch.

Sat at a large conference table wearing a blue pullover, Gates spoke with WIRED in December 2020 from his office overlooking Lake Washington in Seattle. He outlined how a number of different technological breakthroughs, large-scale investment in infrastructure, patient capital, government policy and individual action can have an impact, and provides a roadmap to getting to zero carbon emissions by 2050.

Zero is important: just reducing the carbon were putting into the atmosphere, simply extends the extremely limited amount of time humankind has until we hit planetary boundaries. Currently, the concentration of carbon dioxide in Earths atmosphere is around 414.68 parts per million (ppm) there is consensus that, once the level reaches 450ppm it will raise the global temperature above 2 degrees Celsius, triggering extreme weather events and irreversible, catastrophic change. While some advocates of change suggest that the target should be 2030, Gates believes thats unrealistic carbon is too deeply woven into the fabric of everything we do and could provide a distraction to the more significant goal of zero emissions by 2050.

WIRED: Why this book and why now?

Bill Gates: I did a TED Talk in 2010 on climate and five years later there was the Paris climate talks, and Id been saying: Hey, how come when they have these meetings, they never talk about R&D? They never talked about innovation, and if you looked at the energy R&D budgets of the rich countries they hadnt increased at all.

So everybody's getting together and talking about the short-term reductions, but the only areas you can make short-term reductions are electric cars and using solar and wind for electricity generation. That's less than 30 per cent of the game 70 per cent is steel, cement, aviation, land use... People arent doing anything about those. If you want to get to a goal, you should start working on the hard things, not just on the easy things. I'm not saying the easy things are easy, they're just relatively easy.

These nationally determined metrics the short-term reductions don't really tell the story. I'm not saying they should go away, those are good things, but what is the true metric of by 2050 can you get to zero?

The resonance of the topic [climate change] is very high now, despite the pandemic, which is impressive. But if we don't have a plan to go with that positive energy it's going to be very sad. You're going to get attenuation: people will almost be cynical that we didn't really get going on the 70 per cent that's the hardest.

So that's why I wrote the book, to suggest that the green premium is a metric that when you call up India in 2050 and say, Hey, when you're building new buildings, use this cement, use this steel will determine whether they tell you get lost, or OK, we'll pay a slight premium. If youve innovated enough and the green premium is zero, they'll say, Of course.

Some green premiums for electricity, for instance are within reach. Others will involve huge amounts of R&D and investment. How do you think about that?

The brute force way to solve climate change is to figure out how to do direct air capture, get the cost per tonne down and then just write the cheque. Unfortunately, if you call up Climeworks [the Swiss company that filters CO2 from the air], its list price is $600 (435) a tonne, and they have some government subsidies. So, even if you dream that you can get to $100 (72) a tonne, youve got 51 billion tonnes of emissions, so that's a $5 trillion (3.6 trillion) a year price tag to brute force climate change.

Only by going into the individual areas and changing the way that, say, you make cement, or the way you power cars to be electric, do you get something that's under $100 a tonne. Electric cars are the magic one as battery volumes go up, charging stations get out there and battery energy density increases to the point that range and charging speed isn't that much worse [than combustion engines]. Eventually you can say the green premium for passenger cars ten years from now will be about zero.

Vaccines typically take a decade or more to produce Covid-19 proved we can accelerate that process, but it took a pandemic to show us whats possible. How can we communicate the urgency of the climate emergency?

There is an analogy to the pandemic which is that citizens depend on their governments to understand natural disasters, meteors, climate change and respiratory viruses. These problems are way too complex individuals aren't going to study climate models. For the pandemic, the risk was there and the idea of how you orchestrate a testing capacity and make a vaccine should have been there.

After Ebola in 2015 there were a few things done such as the creation of CEPI [The Coalition for Epidemic Preparedness Innovations] along with Wellcome in the UK, ourselves [the Bill and Melinda Gates Foundation] and 12 governments. And we've been funding mRNA stuff (mRNA medicines instruct cells in the body to make proteins to fight diseases) for a long time. But, governments have to take complex problems and essentially think through what you have to do. Unfortunately, when it comes to the climate, it's not like there's any vaccine-like thing, where theres a solution and six months from now things are going to feel utterly different.

With climate, when you have to replace every steel plant, every cement plant, take the electric grid and make it two and a half times bigger with intermittent sources this is the entire physical economy. The physical economy is a miracle. Its taken us since the Industrial Revolution to figure out how to make this stuff so cheap and so reliable that we all just take it for granted. Most people flip that light switch and the miracle of innovation that allows their lights to turn on 99.99 per cent of the time, they have no idea. It's so cost-optimised, but now that we have this constraint on it: how quickly can you switch all that around?

So climate is like a pandemic in that governments need to work on behalf of their citizens and anticipate what will happen in the future, but it's way harder than making a vaccine. If the pandemic had come 20 years ago, we wouldn't have been able to make that vaccine. If it came 10 years from now, with mRNA we'll be able to make it faster, we'll be able to scale up more of those vaccines at a cost of $1 (72p) each. We caught mRNA halfway in its maturity cycle, we hadnt made a single vaccine. CureVac is developing mRNA-based vaccines designed to prevent malaria infection. Moderna is focused on HIV and other diseases.

In order to get to net zero by 2050, we have to innovate at an unprecedented pace. How do we best address that challenge?

We need to up the supply side of innovation and the demand side for innovation. The supply side has got many components, it's got your basic energy R&D budget where you just have a bunch of professors or national labs messing around with different ideas, and that's pre-commercial research. In the US, more than half the federal money spent on biomedical research comes from the $43 billion (31 billion) a year National Institutes of Health (NIH) budget. Weirdly these energy R&D budgets haven't had the examination they deserve when it comes to climate events.

Then venture capital has to be willing to take huge risks, and be very patient and orchestrate way more capital than you need for software, microchips or for medicine. Thats because these are big plants and you have to replace a lot, you have to scale these things up so you need to work on the supply side and innovation.

On the demand side, you could put on a big carbon tax but politically its difficult such as when they increased the price of diesel in France even though economists say that it would be good. In most countries well probably end up with a sector-by-sector approach where we say that, for instance, every building has to have five per cent clean cement, or maybe the highly profitable tech or finance companies pay a premium for buildings.

Everybody mistakenly thinks the learning curve means that you make something, and then it gets cheaper than you expected. That is true for wind, solar and lithium ion batteries, the learning curves have been phenomenal. But how do you bootstrap the clean aviation fuel learning curve, or clean steel?

There's a lot of talk that the recovery funds in Europe will get focused on things such as clean hydrogen. But we really need a mechanism to find who in the world has the best ideas about clean steel or clean cement. And the green premium is the metric.

You had an ambitious aim when you started Microsoft a computer in every home. What lessons did building and scaling a company with that impact have that can be applied to getting to net zero?

I'm amazed at what a nice business software is you get feedback from your customers and you add features. And I was optimistic: I would invest in things that would take ten years to get done. I tried multiple approaches, so we often had teams that might develop a database in two different ways to see which would succeed. I had to anticipate advances in hardware [that would impact] our software. We spent a lot of R&D money, but we had enough products that were always fairly profitable.

I had a broader view that we were going to develop many types of software most of our competitors were single-product companies, and we saw ourselves as a software factory independent of word processing or spreadsheets or operating systems. We had a more crazy view that we were going to do every type of software in one company and we had this vision of personal empowerment through software.

We were able to create this research group Google is the only other company to put money into fundamental research. Because, at first, we all just benefited from what the universities or even Xerox PARC had done that they failed to exploit. We hired specific people from Xerox PARC that helped us with graphics interface, networking and other things, and we almost felt guilty that we needed to get back to this pool of intellect.

Some policymakers and leaders are aiming at 2030, but youre fully focussed on 2050. Why that time frame?

In 2050 I'll be 95 years old and I will be super happy if I live to see the day that we're anywhere near zero. This is very, very hard, as it requires all countries to get involved. And so the 2050 date was picked as the best case because a lot of things have to work. But if you innovate for ten years, deploy for 20 years, and you create the right incentives through government policy, you can get to zero by 2050. You have to get going now on the hard stuff and you have to admit: do we have even a clue how we're going to do the hard stuff and find the craziest thinkers?

I'm not smart enough to know all the different ways you might replace cement or steel. You better be searching the entire IQ of humanity globally to find that person or find ten of them and hope that, even if nine are wrong, one will get you there.

I don't know if that will happen by 2050. If we take the idealism and energy the younger generation has created around this and we make it a priority Biden has it right up there with the pandemic, European recovery funds have it very high then, yes it's doable.

Getting to net zero by 2050 is not going to be easy. So anybody who says, Oh, let's just get it done in 10 years, I want them to go tour all the Chinese steel and cement plants and tell me what I'm going to see there ten years from now.

The digital economy has fooled us in terms of how quickly things can change, because you don't need the reliability and scale, and therefore the capital and the regulations. With software, if it has mistakes its not good, but it evolves quickly.

Institutions deploying capital banks and pension funds are going to be crucial in this process. There's a lot of rhetoric at the moment with businesses claiming to be purpose-driven. How can we best measure the actions large investment funds are making, and keep big organisations honest about their actions?

Most of thats all bullshit. The return on a bond for a wind farm is no different than the return on a bond from a natural gas plant, so it's nonsense. The people who put money into Breakthrough Energy Ventures [the venture arm of Gates organisation Breakthrough Energy thats working towards net zero], that's real. The governments that raise their energy R&D budget and manage to spend it well, the near-billion dollars put into TerraPower [Gates nuclear company] to see if this fourth-generation fission reactor can be part of the solution... Those things are real.

All this other stuff like, we're gonna make companies report their emissions. The idea that some financial metric reporting thing or some degree of divestment how many tonnes? Youve got 51 billion tonnes [of CO2 that needs to be removed]: when you divested, how many of those 51 billion tonnes went away?

Youve got to invest not divest. And the notion that you just happen to own equities or bonds related to the easy things that are already economic, such as solar farms or wind farms... Whenever somebody says there's something called green finance, I say let's be numeric here: is the risk premium for clean investing lower than the risk premium for non-green investing? The answer is: just look at the numbers.

The idea that banks are going to solve this problem or that these metrics are going to solve this problem, I don't get that. Are they going to make the electricity network reliable? Are they gonna come up with sustainable aviation fuel? It's just disconnected from the problem and allows people to go off and blather as though something's happening.

The last couple of weeks have seen the Covid-19 vaccine roll-out begin. Do you think that will increase trust in science, which will impact the urgency to act on the climate crisis?

Whenever you do innovation like social networks, at first you're not sure what phenomenon will emerge out of that. I do think the pandemic has helped social networks realise that the First Amendment is nice, but allowing lots of vaccine misinformation is not good for society.

Drawing the line between the crazy all vaccines are bad, everybody will get autism versus legitimate [commentary] on people who have allergic reactions is very hard. At first the [social networks] thought we will just let the craziness flow, but the fact that the wrong stuff is so titillating draws people in.

We hope that this process has accelerated some maturing of the social networks so that the things that get a lot of attention and are really wrong, that these are greatly reduced or put alongside the truth. I don't know if that will happen, but I have seen it including conspiracy theories that relate to me they're doing a better job of saying, OK, we don't want ten million people to see that today because it doesn't serve their interests or society's interests.

People are more educated today than ever and somehow we've gotten to this point where climate change has become political, mask wearing has become political.

For some types of innovation this has been a period where the normal rules don't apply. The idea of 100 companies all working on one disease is insane, because five or six of these vaccines at most, will end up getting used. So you've got 94 companies efforts that are completely redundant, particularly now.

We still need Johnson & Johnson, AstraZeneca and Novavax, because those [vaccines] are more scalable, cheaper and more thermally stable. But, once we get those five [including Pfizer and Moderna] then we probably don't need any more, because fortunately it turned out it was easier to make a vaccine for this disease than we might have guessed: the first that are proven are working very well.

Science has become politicised in the past few years. We're seeing a transition between administrations in the US, do you think that's going to impact policy as relates to getting to net zero?

In the Democratic primaries people were talking about trillions of dollars being spent against climate. Well there's two problems with that: a) that money will never be allocated and b) spending that scale of money doesn't really connect to the problem, its more about creating jobs [by doing things such as] insulating homes.But those homes should use electric heat pumps, and you should get electricity to zero. You must have people who are in the centre and saying, yes, this is a good goal, but how do you realistically achieve that, and at the minimal price for doing so? You want debate about that, and market-based pricing actually allows a lot of resource choices to be made in a very efficient way. That's why, if you could have a properly done carbon tax, it would be a nice thing, but that's not going to happen in most countries.

So, yes the Biden election is fantastic. He's got climate as one of his top priorities along with the pandemic, he's picked people that know this topic and he's put them not just in specific roles like the Department of Energy, but even people such as Brian Deese to head the National Economic Council. He was the [Obama] White House climate person, and I got to know him when we were doing the Paris climate stuff.

You acknowledge early in the book that youre an imperfect messenger a rich, white guy some people will accuse of having a god complex. How do you communicate the idea that forget Bill Gates in all this its a problem that all of us have to fix?

The fact that we need better metrics in this field surprises me. It's a field with a lot of positive energy but without a plan. And so you have to work backwards from zero. If there was some book that had already explained all this, I wouldn't have written it. I can write books about malaria and HIV and diarrhoea. Now, maybe not as many people would read those, but that global health work we do is truly neglected. You can save millions of lives. And it's hard stuff we don't have an HIV cure yet, but we're trying to use gene therapy and make that super cheap so there's plenty of interesting work for the Gates Foundation, such as improving agriculture with new types of seeds, and even improving photosynthesis.

This field [climate] as I learned about it, the framing wasn't quite right. I actually resisted the idea that I should choose to speak out. Instead I thought, I'll just do a little bit, like that 2010 TED Talk that I did. And then this field, because people care so much about it, would then mature in terms of its metrics and working on the hard things. When we were talking about the 2015 Paris talks, it makes no sense why am I at it, saying there should be an R&D section?

So, I'd say it's strange that the background I have of systems thinking to drive innovation brings a slightly richer perspective. OK, not everybody reads Vaclav Smil, not everybody is that numeric. People read articles saying, this is the equivalent of 20,000 houses or, you know, 50,000 cars, and they don't call up the publications involved and say, why are you spewing these completely confusing metrics?

I have this effort to create an open-source model of electricity demand generation that includes weather models, so the countries that have made really aggressive commitments about renewable use can see that their grid is going to start being reliable. Now that the utilities are being told, Oh, you have to sign up to these things, you need an open-source model that really shows, do you have enough transmission, storage or non-intermittent sources like nuclear fission or fusion?

The fact that Im running an open-source model to test whether these aggressive goals are achievable, it blows the mind why am I funding this model for these electric grids, which is the most obvious thing to do when you look at climate change?

If you had to bet on a single breakthrough happening in the next decade that really was a game changer, what do you think it would be?

Well, part of the point of the book is that [we cant rely on a] single breakthrough, we need artificial meat, we need lithium... But I would say, if you can get super-cheap green hydrogen, it sits in terms of the industrial economy at the peak. So, if you pencil in ridiculously low-cost hydrogen, then I can tell you how to make clean fertiliser and clean steel, and even clean aviation fuel.

We have to be careful: some scientific miracles like a storage one may never occur. Some people are now talking about super-clean hydrogen. They don't get how hard it is, and there's a good chance it will never be possible to make cheap, green hydrogen.

In this space we need about ten breakthroughs before you can really see a path to 2050, but clean hydrogen is higher than most people would expect. And storage miracles, and either fission or fusion. The book is supposed to make you think it's not like the pandemic vaccine, though.

Are you optimistic that we can get to net zero by 2050?

Absolutely. But thats just my personal bias I'm an optimistic person. I lived through the digital revolution, where every dream we ever had about computing came true. So, I don't have proof, but yes I am optimistic.

Greg Williams is the Editor of WIRED. This conversation has been edited for clarity and brevity.

How to Avoid a Climate Disaster: The Solutions We Have and the Breakthroughs We Need by Bill Gates is published by Allen Lane on February 16.

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