Often when we buy new shoes, we have to learn to walk in them – a process that is long and sometimes, uncomfortable. If you hadn’t walked in my shoes, you wouldn’t know what they truly felt like. The reason I use this shoe analogy is because it’s a phrase often used by people living with chronic conditions: “You can’t walk in my shoes!”

Had you not lived and experienced my condition like I have, you couldn’t possibly walk in my shoes. Those who unsuccessfully ‘walk in my shoes’ are those who talk about lives of people living with a disease when they themselves are uninformed – simply because they haven’t lived with it. Patients are the only ones who truly understand a condition, and they’re the ones who are constantly learning to walk in new shoes.

For newly diagnosed patients of chronic conditions, other people often make your decisions for you. The assumption tends to be that the doctor will know the best course of action and appropriate next steps for your treatment, with family members or loved ones thinking that the doctor knows best. However, it isn’t always that easy. First, patients must learn more about their disease, as they’ll often be the ones deciding on next steps, like the decision to try or reject a form of new therapy.

Once informed, a patient could ask the doctor for a new therapy they read about online, one that would perfectly suit the life of the patient. This is what I did, as my previous treatments and therapy didn’t work for me and my way of life.

“It is not approved for our market or stage of disease”, the doctor said.

I was disappointed. “Who is it that makes the decision about a medication for a patient group? Is it just healthy people? Do they know what is going on in my life with MS?” I asked. “Can these people truly walk in my MS (multiple sclerosis) shoes?”

It is all about HTA – Health Technology Assessment

Once a Medicine has approval from EMA (European Medicines Agency), countries do their own HTA Procedure in order to get approval for that medication in their health system. The medication then has to be paid for by the government. The HTA Bodies are different in every country and are influenced by the economical, ethical and political structures of that country. In some places, patients or patient groups are heard and can influence policy. But, sadly in a lot of places, this isn’t the case.

There is no doubt

New medicines must be checked and approved. There must be clear benefits, economic feasibility, and last but not least, patient safety. The decision must be made in a way that is both careful and sustainable, as the treatment is a long-term goal and that patients hope will be available for a very long time.

How health data can help

When it comes to a HTA Process, there’s one essential factor that is considered: health data. On the one hand, a lot of data has already been collected and verified by Pharmaceutical Companies - the developers of a new treatments. This data, given by patients and doctors in clinical trials, is highly qualitative data, that which is necessary for a thorough and accurate decision-making process. This data provides a strong overview of how the body works and reacts to the new drug and its possible side effects.

However, to truly know more about a patient group and a condition, there needs to be more qualitative data collected. Very often we talk about the quality of life brought about by certain conditions and how this has changed over the years. No longer should our understanding of a condition solely be orientated by the success of a medicine; it also must respect the holistic picture of the life of a patient.

So, additional data provided by patients or citizens can help researchers to better understand the life of a person living with a specific disease. We all know that one size or decision does not necessarily fit all. But these key learnings and the core knowledge we receive from patients, those that detail real-life information about disease management and the way the patient is feeling, help us to much better understand the realities of a chronic condition – way better than an individual who has only walked in the shoes of a patient for a short moment.

This core information collected in health data allows better evaluations and ratings to be made for a new medicine. This is why the discussion of patient-centricity and patient involvement is so integral.

The holistic picture of a patient group

Health data given by patients and citizens can help to create a holistic picture of a patient group, encouraging medicinal reviewers to make valuable, ethical and correct decisions. It also ensures that patients are heard in the HTA processes.

With health data sharing, patients can influence the decisions of those who do not walk in their shoes, helping them to better understand how to walk in those shoes, so that they can make important and fair decisions.

By Birgit Bauer, Social Media & Digital Health Expert, Journalist, Speaker and Analyst. Data Saves Lives Editorial Board Member