The health economics of patient organisations

Patient organisations have tried for ages to become an appreciated and integral part of our healthcare system. As long as we keep fighting for the basic human right to have representation in decisions affecting us, the political system will be deaf to our pleas. As long as we keep advocating for participatory democracy to include all perspectives in healthcare with the aim of improving efficacy, the political system will be deaf to our pleas. As long as we explain how much our volunteer work acutally means for the individual patients and their familes that we actually help and support, the political system will be deaf to our pleas.

The only way it will work is that we can demonstrate value, our financial value to the system. Why? Because politicians in every country see their healthcare expenditure increase with no obvious solution to keep it under control. Talking about money is the key to be heard in politics. This may sound a little harsh, and I don't want to generalise this to all politicians, but even politicians who support us, are confronted with the fiscal requirements of the political decision-making processes.

1. Patient organisations understand the value of mapping the patient journey.

By mapping the patient journey, from early symptoms to end of treatment, we - and only we - can identify what needs to be done to make the system faster, correcter and more intelligent. Today, millions of wrong diagnoses are made in the EU without anyone even noticing that these diagnoses are wrong, except for the patients who get the consequential wrong treatment. We can identify, based on patient experiences, which mistakes were made, and where, and we can provide feedback to avoid this from happening again to other patients. We can identify throughout the pathway what can be improved, how efficiencies can be gained, how services can better interconnect, etc. This systematic and robust patient feedback is worth a lot of money. Even for common diseases, it may take months for a correct diagnoses. For harder to assess diseases, such as sickle cell anemia or endometriosis it may take up to six years.

2. We are the feedback system of the healthcare system

Our healthcare system is funded on interventions and medical performances. The only measure to assess results is the patient. We are the feedback mechanism of the healthcare system, and usually kept out of the system. The doctors and hospitals report whether results have been achieved, and which ones. This obviously gives only a purely narrow technical perspective on the issue, with no insight into the actual reality behind the biomedical data. We can provide real world data and real world evidence about outcomes and experiences. This is worth a lot of money today. It demonstrates the difference between one treatment over another, it demonstrates the difference between one hospital and another. It allows to benchmark and to identify best practices. The capturing of real-time patient outcomes (both biomedical and subjective well-being) should be the essence of our work, but obviously this does nog generate much enthusiasm from the services who are afraid of being evaluated in this way. Give us the money to measure all this. The savings will be gigantic, not to speak of the value for patients themselves.

3. Patient organisations understand the value of early detection

Patients who are diagnosed early, have typically earlier treatment, better outcomes and quality of life, and a much lower cost to society. Patient organisations can - each for their disease - help identify how early diagnosis can be improved, by helping to set up screening programmes, by education primary care physicians, by educating people.

In colorectal cancer for instance, in some countries 48% of all patients are diagnosed in Stage I, when the chance of survival is 90%, and the cost is 1/10 of a late stage treatment. In Europe, on average only 13% of colorectal cancer patients are diagnosed in Stage I. Patient organisations are the only stakeholder who are advocating for improvement on this. The 'good example' exists ... so why not do the same: it saves many lives, it saves a lot of money? This remains one of the deepest mysteries of our healthcare system. Nobody seems willing to act, despite the data, despite the lives and money saved. Mind-boggling ...

4. Patient organisations understand the value of individual support

Our healthcare system assumes that all patients are 'self-reliant', capable of coping with their disease and treatment. That is not the case, unfortunately. Patients need personal education, personal support to find the right services, to understand their rights, to complete the paperwork, to understand their rights and the services they are entitled to, etc.

For instance for people with dementia and their family, who get individual support, the average delay in being admitted in a residential care centre compared to unsupported patients is 557 days. At a cost of €50/day, that is €27,850 per person saved by the support of the patient organisation. With our Alzheimer League in Flanders, we have more than 100 local groups who support individual families. We receive €12,300 in total subsidies for all patients across the region (yes, not per patient, but for all patients together). The number of patients living at home with dementia in Flanders is roughly 100,000. Calculate the potential savings by organising this properly. The gains are astronomical. If we supported 1,000 patients like this, the gains would be €27,850,000. If we assist 10,000 people with dementia like this, the gain would be €278,500,000 ... The message is clear: fund us properly, allow us to do what needs to be done, and everyone will benefit.

5. Patient organisations understand the value of quality healthcare

We advocate for better transparency on health outcomes. We see that for some diseases the survival of patients varies significantly by hospital. We once calculated if all colorectal cancer patients were treated in the best hospital in Europe, 120,000 colorectal cancer patients would not die every year. Without innovation. Without new technologies. Just getting things organised like the best hospital does. Even in Flanders, we would save around 1,200 lives every year. Just for colorectal cancer. Multiply this by a low estimate of €40,000 per life year, and this already saves 48 million euro. If we, as patient organisations, would not constantly advocate to have actions on this, nothing much would happen. We have skin in the game. Our sense of purpose, our sense of urgency and our energy are clearly significantly higher than those of all other stakeholders. We just lack the funds and the formal connectivity to let our voice be heard in order to have a meaningful impact.

6. Patient organisations understand the value of treatment adherence

Patient organisations help increase health literacy of their members, help them to navigate the system to find the correct support for their needs.

According to some estimates, the lack of medication treatment adherence is the cause of 200,000 deaths every year in Europe, at a cost of 125 billion euro. Extrapolated to Belgium, this means 4 billion euro every year.

Many years ago, some psychiatric hospitals in Belgium set up a patient follow-up programme to ensure proper adherence to medication after having been discharged from the hospital. Volunteers called patients every week to hear how they were doing. If there was no response, they went to the patient's home to understand whether they could use more help. Patients who received this kind of volunteer follow-up, had 30% less relapse than patients who did not receive this service. Relapse meant several weeks in hospital at a daily cost of €1,000/patient. The health economic value is obvious, but this could never be reimbursed because the service did not match any category for reimbursement. Patients and tax-payers are the victim of this.

7. Patient organisations are critical to generate value for clinicical research

This is possibly the area in which formal patient engagement has been the most advanced, and for obvious reasons: you do not wish to invest billions only to find out afterwards that the new treatment does not correspond to patient expectations and needs. Many studies have been made on the subject of the Return-on-Investment on patient engagement, with one study even reaching the figure of a 500-fold return. This has of course to do with the relative low cost of patient engagement versus the high cost of innovative new treatments.

There are of course many more examples, and I encourage readers who can share other sources to please share them. The more examples we have, the better.

The blind spot in our healthcare funding is the cost of technology (hard, innovative, spectacular, powerful, costly, ... ) versus the soft value of human support (listening, caring, educating, practical, navigating, supporting, ...). Both are needed. Both need funding. Both need representation.

In sum, we should be able to demonstrate that with the right level of funding, we could offer the right level of services that generate results that significantly surpass the level of funding. A basic requirement is of course that we are also part of the process: that we are sitting at the tables where decisions are made about us, and where we can - with the right figures - demonstrate with clarity how the system can be improved to the benefit of patients and tax-payers.

We tell you the whole story.