Empowering Cancer Patients After Diagnosis
Blog Sep 20, 2019 | by Holly Large, Editorial Assistant for Technology Networks
We recently spoke with Jed Coleman, co-founder of Curve.life: this is an online service which aims to provide cancer patients with evidence-based information about how they can empower themselves after diagnosis, with a focus on how diet, exercise and mental health can help improve quality of life.
Holly Large (HL): What is Curve.life and what are some of the reasons why it was developed?
Jed Coleman (JC): Curve.life is a self-help resource for cancer patients and their supporters. Curve focuses on the things that patients/ supporters can do alongside their medical team to help themselves, not just feel better but also live longer. Curve aims to “activate” patients, to get them involved with their own treatment and look at things they can do to help.
It was developed after the founder’s father was diagnosed with cancer and it became apparent that it was not part of the standard of care to recommend diet, exercise or mental health interventions. In fact, these interventions are not recommended as a matter of course for cancer worldwide, despite them having a reasonable scientific base and no (or minimal) side effects.
There are many reasons why it was developed but an important one is that doctors and health systems require very high levels of evidence before making recommendations (“first do no harm” means it is better to say nothing than potentially get things wrong). This makes sense at the macro level, doctors give advice to hundreds and public health systems to millions; but makes less sense at the individual level. Patients, whose lives are on the line, need to know about things that have some evidentiary base but which don’t yet reach the high standards required by doctors. This is basic risk management and is how risk is viewed in other fields, but it’s not how it works in medicine. The result is that patients don’t get all the information relevant to them from their doctors.
HL: How is the evidence used on Curve.life being sourced?
JC: From articles published in leading journals. The project is backed by four leading oncologists, a PhD in nutrition and many other cancer experts. These experts review and sign off all materials.
HL: In the press release announcing the launch of Curve.life, we are warned of the dangers of turning to the internet for information about our health. For this reason, there may also be people who are wary of information supplied by an online tool rather than from face-to-face contact with a healthcare professional – how do you intend to reassure users that the information provided is legitimate and reliable?
JC: The project is backed by leading cancer experts (including multiple oncologists) and this is easily seen on the Curve.life website. We also look at risk differently to large charities and government organisations, and thus are happy to engage on issues that are uncertain but which patients want to know about (e.g. can food impact the course of cancer, what about exercise) and do so from the patient’s perspective. We constantly ask ourselves: “what would we do here if we had cancer?” Large cancer organisations don’t do this.
These factors set us apart from those who provide completely unfounded advice at one end of the spectrum and those at the other end of spectrum who are too conservative, who dismiss everything that has not been proven via multiple randomised controlled trials.
We try to strike a sensible balance between these two extremes, and this is unique in the cancer space.
HL: How did you work with patients to develop this tool?
JC: We put patients at the centre of everything we do at Curve, and this is true of the development of the videos and website. We have a number of patient advisers, also shown on our website, who we turn to regularly for advice, and we ran multiple focus groups, surveys and other research exercises when developing our content. Needless to say, it was invaluable.
HL: If Curve.life is successful, could the same principles be applied to create tools for other diseases?
JC: Certainly. A Curve-like service is needed for virtually every chronic disease. People need a trusted information source that strikes the right balance between conservatism and avoiding completely scientifically unsupported advice.
HL: Do you foresee Curve.life being officially endorsed/recommended by healthcare services in the future? What are some of the steps that need to be taken in order to achieve this?
JC: We are in discussions with a number of charities at the moment and expect many to join our mission. We also want to involve large insurers as patient activation and management of chronic diseases reduces health costs. We also expect to engage national healthcare services like the NHS in due course. The process to get this kind of endorsement can be long and cumbersome, and there are other ways to reach patients, but we do think national healthcare engagement important to our long term success. Ultimately we aim to become the number one resource worldwide for cancer self-help.
Also, what we do is consistent with the NHS’s 10-year plan, a key pillar of which is patient activation. As we all live longer we will do so managing more and more chronic diseases, which will only increase pressure on an already stretched NHS.
Jed Coleman was speaking to Holly Large, Editorial Assistant for Technology Networks.