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Aim: To advance our goals in political decision-making using social advocacy. The goals cover a wide range of our areas of activity and relate to all stages of the cancer patient's path.

Social advocacy is one way to carry out our strategy, mission and vision.

General. In 2019, social advocacy was strongly defined by the parliamentary elections and the negotiations on the government programme, as well as by cooperation with other organisations.
Elections. In 2019, parliamentary elections were held in Finland followed by negotiations for a new government. Lobbying work by the CSF had begun apace in 2018. Lobbying work continued based on the targets for the elections set in spring 2018 and further prioritised from the end of the year. The prioritised targets for the elections were:

  • Introduction of health-based taxation
  • Reducing the use of tobacco and nicotine products
  • Development of screening programs, including launch of a colorectal cancer screening programme
  • Accelerating access to care, especially in primary care
  • Reducing the cost of illness for patients
  • Ensuring the quality and adequacy of hospice and palliative care

With respect to targets, in 2018 and winter 2019, we met with key decision-makers and influencers: MPs, party and parliamentary group workers, and special assistants to ministers. Advocacy work carried out in 2018 for developing screening programmes was combined with election advocacy work in early 2019, so that screenings were also discussed at those meetings.

During 2018 and 2019, there were a total of 24 meetings with decision-makers in the context of advocacy on the elections and government programme.

Social media images were created on the goals for the elections, which we posted on social media platforms, and were also for use by member associations. Many associations and association activists were diligent in disseminating the images.

After the start of the negotiations for the new government following the elections, we still sent a message to all the members of the government negotiating team on health to remind them of our goals. During the negotiations, we also provided the Ministry of Social Affairs and Health and the Ministry of Finance with calculations on the cost impact of our cancer screening goals and the effectiveness of screening programmes for use by the negotiators.

Our election advocacy work can be considered a success: the government programme includes some reference to all six of our key goals. During the government term of office, it is planned, among other things, to introduce a colorectal cancer screening programme and implement a development programme for convalescent care, palliative care, and pain management. The same things are also reflected in the General Government Fiscal Plan, completed in autumn 2019. The colorectal cancer screening program is scheduled to begin in early 2022.

Clinical research. Prior to the parliamentary elections, advocacy work was also started to strengthen clinical research. In the spring of 2019, a petition was drafted and handed over to the new parliament in early May – just before the start of government negotiations. The petition was signed by a total of 33 stakeholders involved in medical research. Unfortunately, no mention was made of clinical research in the government programme.

Cooperation continued in autumn of 2019 with a smaller composition: the CSF, the Finnish Medical Society Duodecim, Pharma Industry Finland, and the Finnish Medical Association. The draft state budget for 2020 was sketchy with respect to clinical research, so we sent a joint statement to the parliamentary Social Affairs and Health Committee and the parliamentary Municipal and Health Division of the Committee on Finance. However, lobbying on the budget did not yield results. On 22 October 2019, we held a seminar on medical research with the Society of Scientists and Parliament Members (Tutkas). The other organisers of the seminar were the Finnish Medical Society Duodecim, the University of Helsinki, Pharma Industry Finland, the Association of Young Doctors in Finland, and Tamro.

One life. During 2019, a lot of social advocacy was carried out together with other public health organisations, namely in the One Life project portfolio. One Life’s parliamentary election targets were prepared in winter 2018–2019 and approved in January 2019. A large part of the preparatory responsibility was with the CSF, and the targets were well in line with our own. The One Life advocacy meetings were arranged under the ordinances of the CSF, the Organisation for Respiratory Health and the Finnish Diabetes Association. During early 2019, the One Life group met with key decision-makers and those dealing with background preparations in altogether thirteen meetings. One Life also hosted a seminar called Let’s Talk About Money to discuss the goals for the elections. The panel included several well-known politicians, including two ministers and a party leader. In November 2019, a second Let’s Talk About Money seminar was held, which dealt with one of our key election goals, health-based taxation.

In spring 2019, the CSF’s Public Affairs Manager was appointed as the chairperson of the One Life’s advocacy network, which contributed to the weight of One Life’s advocacy operations in our own advocacy work.
Before the European elections, One Life gathered viewpoints from candidates on the relationship between the EU and health, and produced a newsletter and a video on the subject, which we distributed.

The One Life organisations decided to propose the establishment of the One Life network in Parliament as a cooperative body for parliamentarians and organisations. The purpose of the network is to address common risk factors for public diseases and themes that unite patients, but also, where appropriate, issues that address one group of diseases. The One Life Parliament network was established on 24 October 2019. Sari Sarkomaa MP and Ritva Elomaa MP were elected as the network’s chairperson and deputy chairperson respectively.

In autumn 2019, the One Life organisations developed their targets for social and health care reform (Sote) as well as the government programme for the upcoming term of office. Advocacy work on this began in late 2019. The CSF and the Organisation for Respiratory Health are responsible for meetings with decision-makers.

Comprehensive Cancer Centre Finland. In February, the FICAN cooperation days were held, an event to which the actors of all regional cancer centres and CSF member associations were invited. The Patient Pathway website was launched at the event, which presents an ideal description of how a cancer patient’s care path unfolds, what services are provided to the patient and how their needs are met, plus recommendations for healthcare professionals and decision makers. The website serves as a basis for long-term advocacy work. In the spring of 2019, cooperation was started with SYLVA to develop the Paediatric Patient’s Pathway website.

During 2019, meetings were held with all of the regional cancer centres. The meetings were attended by the CSF’s Health Director and Public Affairs Manager, and the cancer associations in the area. The meetings presented the Patient’s Pathway website, discussed the start-up of FICAN, and community opportunities nationwide and regionally between FICAN and the cancer associations in the region. The FICAN North meeting was postponed to early 2020.

At the meeting with the Cancer Centre of Inner Finland, it was agreed to launch a joint project on patient participation and patient communication. Planning for the project started in autumn 2019.

The CSF is part of FICAN’s steering group, which has operated throughout 2019. In October, a coordination unit for FICAN was established. The CSF Secretary General spoke at the inauguration of FICAN.

Medicines policy. The Access to Medicines group of the Association of European Cancer Leagues (ECL), our European umbrella organization, continued with its activities in 2019. As part of the project, in May we sent a letter to the members of the Finnish delegation to the World Health Assembly (WHA) urging them to support the resolution prepared under the Italian leadership, which would increase the transparency of drug prices and pricing. Also, at the beginning of the year we approached Finnish decision-makers and pharmaceutical policy actors and sent them information about ECL’s Let’s Talk Access publication.

Other advocacy work. In September, we held a debate on Cancer and Inequality at which we presented our advocacy goals in a variety of ways for bolstering equality for cancer patients. The event gained much media visibility.

Through the Patients’ and Public Health Organisations network of the Finnish Federation for Social Affairs and Health (Soste), it was possible to generate content for the texts of the Doctor’s Database service. We agreed with the Duodecim Publishing Company, which maintains the service, to make two new written contributions and to update one other. These contribute to our advocacy work directed at healthcare professionals.

In September, a study we commissioned was published on the Savupilvi portal, which deals with nicotine-free practices at vocational colleges. Advocacy work to strengthen nicotine-free work began in the autumn 2019 by meeting the student organisations of vocational colleges SAKKI, OSKU and SAKU and discussing the possibilities for cooperation.

In November-December 2019, we prepared positions for the Association of European Cancer Leagues for lobbying the European Commission regarding the forthcoming EU Beating Cancer Plan.

During 2019, the targeted learning outcomes of graduating doctors were drawn up. Patient organisations were recruited for the preparatory work. The Head of Public Relations commented on the draft learning outcomes on the Delfoi panel twice in the course of the year.

Statements. During 2019, we submitted the following statements:

  • Statement to the Ministry of Social Affairs and Health on the Genome Bill (June 2019)
  • Statement to the Ministry of Social Affairs and Health the conditional reimbursement status of medicines (September 2019)
  • Statement to the Ministry of Finance and later to the Tax Division of the parliamentary Finance Committee on the increase in the tobacco tax (September and October 2019)
  • Statement on the draft budget for 2020 (October 2019) to the parliamentary Committee on Social Affairs and Health and the Municipal and Health Division of the Committee on Finance
  • Statement to the Ministry of Social Affairs and Health on quality registers (November 2019)

Strategic research

Strategic research here refers to practical health policy research related to health policy decision-making and the implementation of decisions.

In 2019, a study was conducted on the regulation of flavourings for e-cigarettes in Finland, especially on litigation related to regulation, and on how national regulation fits into the European legal framework. The study was published in the journal Tobacco Control (Ollila E. See you in court: obstacles to enforcing the ban on electronic cigarette Flavours and marketing in Finland. Tobacco Control 2019, doi: 10.1136 / tobaccocontrol-2019-055260). The results were communicated to key Finnish and European decision-makers on tobacco policy. The results were also presented at a tobacco policy seminar funded by the NuoTup component. The issue was covered by numerous media outlets.

A medicines policy study on anticancer drugs was launched to investigate the importance and costs of new anticancer drugs as part of modern cancer treatment and future prospects. The study uses data on pharmaceutical expenses as well as interviews with key cancer policy actors. The study will be completed in 2020.