Jana Hlaváčová: To Change the Health Care System For the Better Is a Task For the Whole of Society

Jenda Žáček: Why did you decide to enter health care politics? What was your journey here?

Jana Hlaváčová: I have always been interested in things with a deeper meaning and real value that have an impact on the world, preferably on the whole of society. I decided to focus on this particular area when I was diagnosed with disseminated sclerosis. The topic that I feel very strongly about is patient participation in health care policies and support for the nonprofit sector, for civil society. That is what I have been working on for the last few years at the Ministry of Health.

Do you truly believe that the Ministry has a real impact on people’s lives?

The Ministry creates laws, policies, strategies and so on. If you want to do something with a large-scale impact, the best way to implement it is through the state administration, if it is done well. Naturally, it is very complicated, and it takes a long time, but working at the Ministry, I have learned that these procedures take a long time for very good reasons. One of them is participation, which allows those affected by a certain issue to voice their opinions, as they should be able to do. In health care policies, this means the patients and patients’ organizations.

Can you tell me more about the participation activities of the Ministry that you have helped introduce?

We have introduced an entirely new participation mechanism thanks to which the Ministry has the Patients’ Council with various work groups and a patients’ organizations support system. This means that the patients are engaged in the process of creating every law produced by the Ministry of Health. This does not mean that every single objection is settled in favor of the patients, but patients’ organizations do have a visible impact.

Can we already see any changes brought about by participation?

Yes, there are many cases where participation has had a large impact. For example, it worked very well when we were writing an amendment to the law on public health insurance.

Thanks to patient participation, a number of health care resources are more available to certain groups of patients, because it allowed us to optimize reimbursement terms – this is the case for people with cochlear implants.

Going back to your question about whether the decisions of the Ministry actually affect people’s lives, this is exactly one of the instances when they do. Patients were also involved, for example, in the preparations of the vaccination strategy during the pandemic. But we certainly did not achieve all this only because of me. We did it thanks to the entire team, the openness of the Ministry of Health and the active involvement of the patients’ organizations members.

Speaking of changes at the Ministry, would your attitude be better described as laying one rail after another in front of a moving train to gradually change its course or as blowing up the tracks with dynamite in the hopes that when the train lands again, it will be on the tracks in the right direction?

Right now, I am definitely a proponent of the former attitude. When I started to work in the state administration a few years ago, I was full of great expectations but also a certain level of disdain stemming from my lack of familiarity with the environment. Looking back, it was very unfair of me. The truth is, it took some time to find out what is and is not possible and why.

What kind of obstacles have you come across?

Probably the kind you encounter when you try to change any environment. I think that it is mainly about the mindset – some people will tell you straight away that something is impossible or that it will take a long time. But we cannot generalize like that.

What was very hard for me to accept was the fact that everything has to be done step by step, nothing can change overnight. I found out that you cannot manage it alone, that you need people who support you.

This was very easy with regards to the patients, because it all started from the bottom up, beginning with a large movement of the patients’ organizations, so people were eager to get involved. At the same time, the Ministry – especially the leadership and many experts – also made an effort and they were willing to incorporate some changes.

You received a leadership award. Would you say that the approach that you chose makes a good leader? Because you have described several things – that you always start a new project with a team, that you look for synergy…

I have never really felt like a leader, nor did I want to become one. It was always the result of the situation, where I had a certain vision I wanted to fulfill. But what honestly helps me be a leader is my disease. Disseminated sclerosis is a chronic disease and it made me learn how to be replaceable. Even though I know that I might be well until the end of my life and the disease will not affect me, the risk is always there.

Even if you did not feel like a leader, you did lead a team of people on multiple occasions, which raises the question as to whether we have too few leaders or too few people with visions?

I think that there are very few leaders in general. It is incredibly demanding both physically and mentally. Take a look at the patients’ sector and you will see the same people over and over again. Those are the people who are willing to make sacrifices, because so far, it is the norm that they work for the patients’ organizations in their free time, not as a paid job. Today’s society focuses more and more on individual needs. This makes it more difficult to find a leader who would do something for others while sacrificing the time they could spend doing something for themselves or being with their loved ones. It is our job to improve the situation in the patients’ sector to such an extent that people do not have to sacrifice themselves.

And what about you?

As for my situation, whenever I accepted a position of leadership, I tried to not work alone and not be irreplaceable. I try to share both responsibility and success with others. Good relationships within the team are very important to me and I need to be surrounded by coworkers who are on the same wavelength, who hold similar values. I like to work with people who surpass and inspire me, who will support me and let me support them.

Is this even possible in the civil service?

It is difficult but not impossible. When I joined the civil service a few years ago, I wanted to focus mainly on patient participation and on supporting the nonprofit sector in health care. After approximately two years at the Office of the Government of the Czech Republic, where I worked in the human rights section, and six years at the Ministry of Health I realized (even thanks to the pandemic) how important it is to pay attention to how the state administration works on the inside.

What are your plans for the future?

An important goal I see in front of me now is adjusting the conditions within the state administration so that it becomes a suitable environment for people who have the motivation to do something good, who have some experience or at least good intentions and drive. The stigma and mistrust towards the state administration reached incredible levels, especially during the pandemic. I think everyone was, and still is, hurt by it.

What do you mean by saying that the state administration is stigmatized?

We are still fighting huge distrust towards the workings of the state administration. When you sit at the Ministry trying to work out some policies or even crisis governance during the pandemic, that distrust really undermines your effort. Even if you understand why it is there for the most part. Another stigma is that many people do not want to work for the state administration because it is not considered a prestigious job.

But the main reasons are the financial reasons – some positions offer such small pay that they pose no competition to the private sector. And that is a real pity.

Where do you have greater need for true experts and good managers than in the civil service, which creates strategies and procedures affecting the entire country? There are not many people like that in the civil service in general, because the system in place does not support, for example, leadership or managerial skills development. Fortunately, that has started to change lately.

You do not work for the Ministry at the moment, which gives you the advantage that you can openly describe some of the greatest current – let’s say – challenges of our health care…

Naturally there are many. I would like to point out the quality of care and the system of how we measure it. That area needs a lot of work. Quality is hard to measure, and it is difficult to evaluate the data. Another big topic is health care reimbursement. Soon we will be under a lot of pressure when it comes to resources – because of the inflation as well as the costs of the pandemic. It is also extremely important to make sure that these changes will not negatively affect the most vulnerable – that means chronic patients, people with disabilities, and so on. We need to keep listening to them to make sure that the measures that are or will be adopted to deal with the situation will not endanger them.

Unfortunately, the health care system and the social services system of the Czech Republic do not communicate very well. But they have a huge impact on people’s lives.

Mental health care is an extremely important area. We can see what a large impact the pandemic has had on mental health, what an immense multiplier effect it can cause. And we still do not have enough services that would be able to satisfy the demand. That is why it is important to keep working on mental health care reform, which includes support for field services, mental health centers and psychotherapy availability.

You live in Brussels at the moment. Did it help you to gain a new perspective on the Czech environment? Can you tell how well Central European health care functions?

Every time I go to a conference, the Czech Republic is always classified under Eastern or Central Europe. But I do not think we really fit in there. Our health care is very different. I would say it leans more towards the West, in terms of quality and availability. This is made possible to a great degree by how incredibly hard our medical staff works. I can also evaluate it from the point of view of a patient, as I have been treated in different systems and the Czech Republic has a really great availability of health care. We have many brilliant experts in various fields of medicine. The primary care availability is, however, a different matter.

But you lived in the capital.

I did, and it is important to point out that my opinion is based on the fact that I live in Prague. Availability varies from region to region. Our child psychiatry and pediatrics availability has been very bad for some time. But the situation in the rest of Europe is not very different, many of the issues are very common – for example lack of nurses, which is a problem for many countries. Perhaps this is caused by the societal prism that does not look very favorably on the helping professions.

What about European cooperation?

During the pandemic, there was a lot of effort to collaborate on the European level when it came to health care, for example regarding vaccine acquisitions and so on. Everyone in the patients’ sector in Europe was hoping that this would continue afterwards as well, but it did not, which is a pity. I think there is a huge potential there and we are not utilizing it.

Do you think there is even any interest in changing the system? For instance regarding availability of care?

There has to be. But availability cannot be generalized. Different fields have different availability. When it comes to highly specialized care, we have wonderful centers in the Czech Republic. On the other hand, we do not have enough dentists, psychiatrists, or practicing physicians. That is why we need to talk about it as much as possible. The fact that civil society is so vocal about it is a very good thing. It urges the state administration but also other organizations to do something about it. Political decisions on the highest level are also very important – they determine the allocation of resources.

The whole society has to decide that this is a field we want to support. This has to happen. If not, we will have to face the consequences and it will take a long time before we recover from them.

I said that we have a similar quality of care as Western Europe, but it has to be said that the terms and maturity of civil society in this sector are more similar to Eastern Europe. I do not mean that we do not have experts in this field, the issue is that the conditions in which NGOs have to function are very poor, including the financial ones.

And how do we stand in comparison with the rest of Europe?

I currently work for the European platform for disseminated sclerosis in Brussels and I can see the difference between cooperating with NGOs from Western Europe and with those from Eastern and Central Europe. It is much more difficult for the latter to participate in activities on the European level, because the people in most of them work there in their free time and at their own expense. We lack a proper system to finance these activities. Yet these voices of civil society are exactly what we need. These are the people who bring us important data, evidence and testimonies. This is the reason why we tried to get them public funding at the Ministry, but since we all draw from the same budget, the sums have been rather modest. 

The total sum of one grant, which is what organization can request to fund their operation, can reach tens of millions of Czech crowns.

Is the establishment of the Patients Hub one of the steps to empowering this sector?

Certainly. Patients Hub was established thanks to funds from Norway. One of the priorities that we as the Ministry proposed was empowering the civil sector in health care. This Hub is a real place where patient organizations can meet, work, teach and learn. It is a place where ideas and concepts can be developed. These can be then used to innovate the state administration. It is one of the activities that looks to the needs of the sector at a certain moment. These needs naturally change over time. So it is important to have a stable environment and to allocate people to work on current issues.

Empowering patient organizations so that they can represent patients’ interests when forming health care policies is a complex undertaking. It is not enough to give them a seat at the negotiating table.

As a member of a work group at the Ministry or anywhere else, you need to be able to compete, to speak up at the round table and voice your opinion.

To do that, you need information, because usually you do not have the same access to information as the other parties. You also need a certain education, because everyone sitting at that table deals in this field as part of their job. You – as a representative of the civil sector – do not. And finally, you need funds. These are the conditions that need to be met if you want to participate. The Ministry uses the Hub as well as other means to try to change them.

2022 Aspen CE Madeleine K. Albright Leadership Award. @AspenInstCE recognizes young emerging professionals with outstanding achievements, and this year it was no different. This year's laureates are Zuzanna Krzątała and @JanaHlavacova.
Enjoy video: https://t.co/9LeHuPv3JF

— Aspen Institute CE (@AspenInstCE) December 15, 2022

What role do you envision for the patients’ organizations in twenty years’ time?

What I would like to see is for no one to question that patients should have a seat at the negotiating table. I wish for them to be heard and not to do this work at their own expense. I would like to see a comprehensive non-profit health care sector with professionally led organizations that regularly participate in the discussions, in the forming of laws and strategies, organizations that have a fixed, clearly defined, indisputable place within this system in the Czech Republic.

Another thing I envision is a mind shift, a shift in perception on the level of the whole of society – that the patient is a partner. Patients should have an active role in caring for their health, patients and doctors should work as a team where everyone has the same goal. And this should work on the level of the whole system as well. Patients should have a seat at the negotiating tables as agentive beings. It is the patients who are able to provide testimonies of what a life with a certain disease looks like, they are the ones able to prioritize their needs. There is no substitute for that, no one else can give you that information.

 

Aspen CE Madeleine K. Albright Leadership Award annually recognizes young emerging professionals with outstanding achievements. As of 2022 the Award carries the name of the United States Secretary of State Madeleine K. Albright, a native of Prague and a friend of Aspen CE, to honor her life-long mission of educating and encouraging young leaders to carry a strong value system and contribute to the growth of society.