'The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at a time of challenge and controversy.- Dr. Martin Luther King
What is cancer?
Cancer is when abnormal cells divide in an uncontrolled way. Cancer starts when gene changes make one cell or a few cells begin to grow and multiply too much. This may cause a growth called a tumor. A primary tumour is the name of where a cancer starts. Some cancers may eventually spread into other tissues and other parts of the body.
Most cancers start due to gene changes that happen over a person's lifetime. More rarely cancers start due to inherited faulty genes passed down in families.
There are more than 200 different types of cancer.
This carefully scripted explanation of cancer was taken from Cancer Research UK home page. CRUK is one of the most well-known charities and/or organisations helping to study and beat cancer.
However, cancer is one of the most funded disease areas ever. The National Cancer Institute, reported that Washington funded 4.8 billion in cancer research in the 2013 fiscal year, and funding has averaged 4.9 billion over the past six years!
So let's take a look at the main cancer research players; the charities, the organisations and patient communities
“We have two options, medically and emotionally: give up or fight like hell.” - Lance Armstrong
Whilst doing research, I came across a staggering 81 different cancer charities from around the world. The most comprehensive list I could find was on canceradvice.co.uk.
However, let's take a look at a well rounded three; one well known, one rarer and one that is founded by a professional world champion...
Cancer Research UK
Founded in 2002, Cancer Research UK is the leading funder of cancer research in the UK from understanding the biology of cancer to cancer prevention. They produce information for audiences including cancer patients and their families, the general public and health professionals.
CRUK focus efforts in four key areas;
- Working to help prevent cancer
- Diagnose cancer earlier
- Develop new treatments
- Optimise current treatments by personalising them.
Cancer Research UK is directly tackling cancer on a research level. In fact, we have 10 users working for Cancer Research UK, with 7 coming from CRUK Cambridge. These individuals are Bioinformaticians, Computational Biologists, Research Funding Managers (Data) and Postdoc researchers. Thanks to discover.repositive.io, we are helping these users find the RNA-Seq data they need to study lung cancer and transcription profiling by array data.
The Lance Armstrong Foundation
Most commonly referred to as LiveStrong.org, this foundation was founded by cancer survivor Lance Armstrong for the purpose of providing education and support to individuals living with cancer, as well as to their loved ones and those charged with their care.
The LIVESTRONG manifesto:
We're about the fight. We're your advocate before policymakers. Your champion within the healthcare system. Your sponsor in the research labs. And we know the fight never ends. Cancer may leave your body, but it never leaves your life. This is LIVESTRONG
LIVESTRONG Foundation not only supports cancer on a patient level, but also supports policies, grants and research. In 2015, LIVESTRONG directed over 16 million to programs & families affected by cancer. Including 4,317,000 on navigation services, 4,222,000 on grants & research, 2,681,000 on mission awareness and 2,584,000 on systems change.
The Rarer Cancers Foundation
The Rarer Cancers Foundation (RCF) is a national cancer charity whose mission is to ensure that people with rarer cancers have access to the best services and outcomes in Europe. RCF raises awareness for people affected by rare or less common cancers.
Sadly over 122,500 people will be diagnosed with a rarer cancer every year, which equates to approx 52% of all cancer diagnoses. RCF provides a bespoke helpline, produces educational resources for patients, their families and health professionals, organises supportive networking for patients, carers and clinicians and, most importantly, campaigns for change.
In the past three years RCF has made a significant impact for rarer cancers by:
- Publishing information on different aspects of rare cancers
- Creating a network for patients needing help
- Tackling the postcode lottery
- Securing access to treatment for thousands of patients
- Changing the law
- Securing a commitment to make available treatments to patients with rare cancers
Persuading the Government to set up the new Cancer Drug Fund
'Cancer may have started the fight, but I will finish it.” gotCancer.org
I was even more amazed, and totally surprised, at just how many patient groups existed specifically for cancer. Again, I wanted to look at three, the magic number... One because of their focus on personal genome tests, one because they actually encourage patients to get more involved with how their data is used, and one because of my own past.
I picked this patient group to research further because it was the name of my last girlfriend who sadly passed away from Septicemia many, many years ago... but she continues to be an inspiration. GRACE stands for Global Resource for Advancing Cancer Education, and offers a wide range of patient resources for different types of cancer, including an online forum where members can directly ask questions to GRACE faculty moderators and doctors, and where other members of the community can discuss diseases and treatments.
After heading to their web page I see a banner which makes realise what a brilliant job GRACE are doing bridging a gap between research and patients.
Much like us, GRACE seems to be more about the people around research than the research itself. Although we care about research and data, we are using crowdsourcing tools and techniques to support people to power research. It's fantastic to see a place where patients can ask questions online, which can be answered by professionals. After interviewing my best friend who beat breast cancer, I realised how hard it must be to comprehend your initial diagnosis for cancer. It must take days, even weeks to digest. It is then, after this digestion period, when you have the questions. So it's great that people can go online and ask questions as well as learn more about research, advancements and what it all means for patients.
CancerConnect peeked my interest because I read they have over 60 CancerConnect groups, such as breast, colon, lung and prostate, but also because they provide a place where people can talk about genetic testing. It is human nature to find common ground, and I cannot help but think about our data collections like breast cancer, and other ones that will appear on discover.repositive.io in the near future. But also about our special connection with personal genomes, and again our own personal genomes data collection. I often read communities which talk about experiences with caregiving, health, supportive care, but not many that talk about genetic testing.
Clicking through onto the site, I first read their logo slogan; community, content and connection. This is so similar to Repositive, accept our content is genomic data. Then I am drawn to the sheer number of views and contributions to the site! 'Over 30,000 monthly posts from patients accessing CancerConnect directly or through our partners'n Although no additional focus is placed on genomics on CancerConnect, they have done an excellent job of explaining genomic and genetic tests and promote how science can tailor treatments. For instance, CancerConnect explains that the Oncotype DX test can help many patients avoid receiving chemotherapy unnecessarily, or provide confidence that chemotherapy is the best treatment option.
I also found it inspiring that a patient support group provided information, and even videos, on the importance of clinical trials. Such education will help patients understand different types of clinical trials, why they exist and what happens if they participate.
'The only source of the data is the patient and I think it's beholden to all of us to share our disease data, so that we change the world and make it a far better place for other who are living with cancer' - usemydata.org
Use MY data began at the 2015 Cancer Outcomes Conference. At a session organised by the National Cancer Intelligence Network and Cancer Research UK, patients met to discuss creating a patient movement with the aim of building confidence in the use of patient data for analysis and research and therefore improving care & outcomes.
A large part of achieving this would be to give patients a much better understanding of the uses of their data, so that they could play a more informed role in the uses of their data.
UseMyData.org actively celebrate published papers and publications which use patient data. I think its excellent that members of the community can actually see the research outcomes from patient data. Seeing impact is a very powerful tool to encourage more patients to consent to their data being used for Research.
CareAcross started in the fall of 2013. This unique company not only spent 18 months researching into the 'pains, needs and wants' of cancer patients and their loved ones, but also have had dozens of roundtables with healthcare professionals with experience in oncology. It was this professional driving force and scientific direction which inspired me to write about them.
Patients, as well as their caregivers, can benefit in 4 specific ways from CareAcross.com:
Pose their questions to the platform, and receive an answer within hours from a broad panel of experts; this is not intended to replace medical advice but can really help guide patients through the maze of information and decisions.
Connect with other patients and caregivers to exchange practical tips and support around diagnosis, treatment options, quality of life improvement and psychosocial aspects.
Use interactive tools to help patients manage their condition. For example, they can use an advanced clinical trial matching tool which enables them to find the best clinical trial just by picking their condition; this uses semantic analysis of public data to match the appropriate filters. Another tool can help them assess their genetic risk of cancer based on scientific guidelines related to the Hereditary Breast and Ovarian Cancer (HBOC) syndrome.
Patients can read the latest information and research developments in oncology, organised by cancer type. These are selected, curated and reviewed daily out of dozens of sources, and aim at delivering the most impactful news for anyone affected by cancer.
Our friends at DNAdigest.org interviewed Thanos Kosmidis, founder of CareAcross.com earlier this year, you can read the full interview here.
The PDX Consortium
At Repositive we also care about patients and it is our aim to help researchers to help patients, faster. Improving oncology research is just one example of our mission, and we are coordinating a consortium of partners to implement a centralised resource for PDX model data discovery to support and speed up cancer research. The consortium promises numerous benefits to PDX users and PDX vendors. All partners have the opportunity to influence the design of the product from its inception to meet their specific needs. At the end of the pilot, we aim to create a brand new pre-competitive resource that researchers from all over the world can use to find the data they need to perform life-saving and life-changing research.
The PDX consortium is not just for data consumers and data providers. The Repositive mission extends beyond this. Better discoverability and access to PDX models will ultimately benefit patients by supporting better diagnosis and treatments.