If 2 Patients with data about their disease progression would share this with each other, together they would know more.
If a 100.000 patients have their data and share it together, they could change Healthcare.
Patients already Experiment
Patients all have their unique journey, as they are all unique people. Patients try different medicines, go to therapy or try other alternative solutions. If it works they are happy, if it doesn’t patients go on searching for other solutions or “accept” and try to go on living.
Patients do one big experiment while they use the advice of specialists and experiences of fellow patients to navigate. Some patients only use regular treatments, others try to solve their problem with alternatives, therapies, vitamins or food & Life changes.
Patients together try every treatment available, medicine, therapy, vitamins, minerals food, alternative & lifestyle changes.
Keep a diary
Individual experiments are the base of experiences patients have right now. But experiences change over time by emotions, memory or personal circumstances. These are not very useful to change healthcare as it is now.
By keeping a diary, patients collect unique information about their daily lives and all they do to feel better.
Big changes in history are always done with the power of the people. People worked together to be able to vote, rights for woman, freedom of religion and speech. People started workers unions in the early ages of the industrial revolution, to get more rights for the working class. All done by individuals starting to work together and create a movement.
Now its time to change Healthcare. By working together patients can create the changes that they need.
Create data sharing
As long as patients have their data individual, they have their knowledge individual. By sharing data with fellow patients, groups, specialists or research, they create common knowledge that they can use to support their goals.
In nobism point of view, sharing data is an individual decision and right. If you share, you should be able to decide what and with whom you share. And it should be anonymous when necessary, just because it is your data.
Create a marketplace and income
Having chronic conditions makes that patients can collect valuable data. Why not look at these data as a hotelroom and nobism as booking.com. We can “rent-out” our data to create an income and a share to support the network. Most patients lost the ability to work and with it, the option of a brighter future.
The different diagnoses patients have, also bring in extra costs for treatments, operations and other necessaries needed to live as a patient. So they now loose on 2 sides.
Nobism will build a marketplace were patients can trade their data and generate income. Only with income patients can create an even playfield between them and industry. If they stay non-profit, like most patient driven initiatives, they always need to hold out their hand to get financial support.
Support Patient Leaders
Within every patient group there are active people. Patients should support the ones that want to take the lead and support data so they can do their work. Patient leaders will keep groups together, like they do already on Social media. They know the people in the group, can be a central point for questions and could be the voice to the rest of the network.
Patient Leaders should also have the ability to connect to other groups with common interests. These groups could be from the same region or culture and with groups on the other side of the world, we are all in it for the same. Even working together based in treatment instead of diagnose, could be an interesting option.
When new information or treatments are available, they can use their network to spread the message worldwide.
Find trends of best treatments
Together patients have all the knowledge and tools needed to start own research.
They have the unlimited access to technical solutions, specialists,, external databases, software and Artificial intelligence. This will help them to find their own trends for best treatments.
Nobism knows a “trend” isn’t the same as “scientific proof”, but it gives direction. If trends get validated by scientific proof, patients can legally use them as treatments and specialists can subscribe them.
Support Patient Advocates
Patient advocates can talk at the highest levels to support our case. Patients should supply them with their data, trends and commission to back them up and support their goals.
Representatives at the highest levels can lobby government, industry and research in our favour. They can use their power to steer research and change legislations that are blocking or delaying our progress.
Steer research with trends
Having data and trends will give patients the option to steer research in their direction, choosing the ones that are more interesting to them than others. Now they can only participate in the ones that are chosen already. This is an important problem in Healthcare
Having patients at the decisions making of were research goes, means patients can change the direction of were Healthcare goes.
Validate own treatments
If patients can steer research they can validate the treatments that are in their best interest.
While industry looks at the most profitable treatments to patent, Patients interest is to have the cheapest ones.
While industry looks for more profit every year, patients are interested in spending a bit less every year.
These 2 basic differences will make patients choose a different path and change healthcare step by step.