The beta version of patientube.com recently went online. It is a platform for patients and their families, founded by Andrea Rindernecht. Its aim is to provide personal motivation for patients with hepatitis C.

Here is one patient’s story.

“I was infected with the hepatitis C virus. How did I become infected? Through a contaminated syringe during an injection. After the diagnosis, my life was shattered. I felt unwell after the therapy I underwent during treatment, and even my friends noticed that I looked poorly, although they knew nothing about the hepatitis C. After all, the infection has a bad reputation and is compared with AIDS…

My wonderful doctor then prescribed a new therapy with a highly effective and (as yet) not very expensive drug. Out of gratitude, I would like to tell others about it in order to help people affected in the same way as I was. We want to be brought together in one place, on a single resource, because together we are stronger.”

On the patientube online platform, patients can post short videos about themselves, made for example with their mobile phones.

Questions and answers about illness

Here people talk about their illness and the ways they have recovered. They describe their treatment, the side effects and how they gained access to rare and expensive treatments, and they share conversations with their doctor or psychotherapist online. They talk about their experience in self-help groups and about the reactions of colleagues, employers and family. And anyone can access shared data with the owner’s permission. Here people give others the hope and the feeling that, together, any hardship can be overcome.

A few words about hepatitis C: it is an illness with a touch of taboo that people tend to avoid discussing – but at last it can now be treated very successfully.

The aim of patientube

Patients should be cured and have access to the medicines they need. These are still so expensive that health insurers pay only for patients with advanced stages of liver disease.

A way is needed to organise interaction among those affected within their own circles, so that they are better informed about hepatitis C.

Common diseases

Having started the platform with hepatitis C, its creators propose moving to the next level and covering approaches to the treatment of other “common diseases”:

  • diabetes,
  • all tumour diseases, such as breast cancer, prostate cancer and so on,
  • so-called rare diseases (Parkinson’s disease, Alzheimer’s / dementia),
  • problems after a stroke,
  • insomnia and sleep apnoea,
  • depression during chemotherapy,
  • hearing problems,
  • preventive medicine, etc.

Chronic diseases and rare diseases in children will gradually be included as well. Psychological support is also a very important topic: how to cope with illness, and the question of self-help (“What can I do myself?”, “How should I communicate with my doctor?” and so on).

External experts are to be involved on further topics:

  • How should I eat?
  • How can I live and work with my illness?
  • How can I cope with the stress and humiliation that illness brings?
  • How can I support my family?

How the platform works

You send your videos by e-mail to idee@patientube.com. They are then checked by medical professionals for accuracy of content before being published on patientube.

Anyone who wishes to join the project sends their personal story and ideas to idee@patientube.com.

The founders promise to treat the information they receive carefully and with due respect, because they understand that every story and every video sent in takes courage – the courage to open up about one’s illness. Yet this is the beginning of encouragement and the path towards relief or a cure.

We want to give patients a voice and the opportunity to listen to one another. People and their suffering must be understood and taken seriously. Mutual respect, and the courage and strength of each individual, can also help in treatment.

Rather than waiting for the storm to pass, let’s dance in the rain.