Anna Cabanes, a public health specialist based in Washington, is one of the founders of Onconecta, a digital platform which aims to empower breast cancer patients and help them make decisions about their treatment and other issues that can improve their quality of life. She presented her project, which she created with two other oncology professionals, at an eHealth Talks session organized by the eHealth Center. Cabanes is also a co-author of the Implementation Framework of the WHO Global Breast Cancer Initiative In this interview, she spoke about the innovative aspects that Onconecta brings to the world of patient empowerment.

How did the need to create Onconecta come about?

There are three partners: Cynthia Villarreal, who is an oncologist; Alejandra Platas, a psycho-oncologist who trained at the Hospital de Mar in Barcelona; and I'm a specialist in public health. All three of us had worked with patients' associations for years, and we realized that despite all the efforts and resources that were being used, patients still have very limited knowledge of their disease. There's also a considerable degree of paternalism by doctors towards patients, and despite the emphasis on making things patient-centred, patients can't make decisions if they don't have the right information. And in some cases the oncologists haven't kept up to date with the latest breakthroughs, and don't provide the most effective treatment. That's why it's vital that the patient is properly informed. We created Onconecta with this mission in mind.

How does the platform work?

Once you've registered, the platform selects the appropriate information for your specific type of cancer. For example, if you have a triple-negative breast cancer, it will filter documents tagged with that type of cancer, and you'll receive the right information for you. It can be a useful tool for both associations and oncology professionals, to help them find out where they can refer patients, and for patients in a personal capacity. It contains information on medical treatment for the different stages of cancer, as well as on complementary treatments and lifestyle advice, about exercise, nutrition and psychology. We also want to stress that we don't provide medical advice, we're not an online doctor, but instead a source of information based on scientific evidence to help patients have a better quality of life.

What kind of content do you provide?

The content is in the form of short capsules of information in a language that patients can understand, but at the same time they're not so simple that their educational essence is lost. We've decided to make videos, infographics, as well as articles – the type of information you can consume while you're on the train, for example. Cancer is a disease that generally affects the elderly, but it also affects many middle-aged people (aged forty to fifty years old), who are already used to consuming content from TikTok, Instagram and other platforms.

How do you produce the responses the patient is looking for? Does your system use artificial intelligence?

We use a variety of resources. Our team of oncologists has developed a range of content that is personalized according to the patient's profile and the type of cancer they have. After it has been tagged, an algorithm selects the most appropriate response for each case. The users can also search for information by category. Each diagnosis is a category; for example, breast cancer in men, advanced breast cancer, etc. We also attend the major congresses on cancer, organized by the American Society of Clinical Oncology and the European Society for Medical Oncology, among other bodies, so we can tell patients about the latest developments in research.

What are the requirements to be part of Onconecta?

Although access to the information is free, users must register. Patients need not necessarily have to give their personal details (they can use a pseudonym), although they do have to provide their diagnosis, specifying the type of cancer at the molecular level (if it is a triple negative breast cancer, HER2, etc.). This all helps us to evaluate how the platform is performing, to find out which content has been most successful, among which patient profiles, etc. It is also a kind of internal quality control. In the long run, we want the relationship between the platform and the patient to be two-way.

What stage is your project at?

We're currently focused on developing the platform and producing the content. We've started to build a community on social media over the last year, and to encourage patients to register in order to have a critical mass for when we launch it, as well as working on the brand.

The image of breast cancer associated with patients' associations, in which the colour pink and paternalistic messages are prevalent, has often been criticized.

Exactly. We want to have an inclusive brand, steering away from the pinkness and that somewhat paternalistic image. You can see this if you look at our Facebook and Instagram profiles. We also aim to reach all types of users, and above all we want to reach people who are empowered in other aspects of their lives, but who don't have the tools and information they need to deal with their cancer.

Don't you think there are already too many patients' associations that offer these services?

It's true that a lot of associations design educational materials, but we believe that many of them are unable to allocate the necessary time or resources to them to empower patients. Our idea is to form a community – a kind of Facebook of breast cancer patients – offering high quality information about the disease that can influence society. We also have a global commitment, and we focus on the Spanish-speaking world: Spain, Latin America, and subsequently, Spanish speakers in the United States.

There are many more associations in the English-speaking world and it is more competitive, but in the Spanish-speaking world there are needs that are not yet resolved. We have come across quite a few associations that are very traditional and sometimes too closely related to governments and dependent on them. With our digital format, we believe that we can overcome many obstacles and be a tool for the future for patients.

What is your business model? How do you finance the project?

As I said earlier, the service is free for patients. First of all, we three partners have made an initial investment. And most of the funding comes from the private sector, mainly from grants from the pharmaceutical industry, although our content is independent and evidence-based. We don't make mention of any commercial treatments. We also think we can earn income from other health-related industries. Furthermore, we believe that patient associations can be a useful partner, not for funding, but for sharing materials and content, carrying joint out initiatives, etc.

What kind of cooperation have you established with the eHealth Center?

I come from the world of public health research, and I saw that the research carried out by the eHealth Center fitted in with our mission. We organized a joint symposium in May, and our idea is to sign a collaboration agreement. Although ours is not a research project, we do want to follow a scientific methodology in order to document what we are doing and to evaluate how it works, and the UOC can support us in that respect.

Meanwhile, Barcelona is an innovative city and undertakes cutting-edge research in oncology, which can also be beneficial for the platform. In fact, one of the future lines for the project is to be able to offer our services to hospitals and insurance companies, among others. We believe that as experts in eHealth, the UOC can advise us in this and many other areas.