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Longfonds contribution to patients’ involvement in research

EFA member Longfonds featured in article from an international medical journal for its efforts in a government initiative aiming to empower patient participation within lung research. The unique study uses case studies to demonstrate the added value patients provide to research projects when their input is valued and integrated successfully.

In a special issue on Asthma Research this month in the international medical journal Health, an article was published referring to the attempt made by Longfonds, a Dutch Lung Foundation and member-organisation of EFA, to increase patient involvement in scientific research. The Longfonds team worked on a government initiative which aimed to increase patient participation in lung research by involving patients in evaluating the societal relevance of proposals for research funding. The article presents the results of a seven-year case-study by analyzing patient participation and patient perspective in the Longfond’s research cycle. The study was conducted using an actors-interaction model against the background of the dynamics in society. During the study, different aspects were examined, such as:

  • On what basis are research themes initiated?
  • What criteria are leading in the Longfonds research?
  • What is the basis for control patients in Longfonds research?
  • What is the scope for patient participation in Longfonds research?
  • How is patient representation and patient participation in Longfonds research organized?
  • What is the level of support for patient involvement?
  • What is the role of contextual considerations?

Following this new initiative, patients with pulmonary diseases currently form advocate groups which are trained and provided with an assessment instrument so that they may review and evaluate the level of societal relevance of research proposals from a patient’s perspective. That way, scientific and societal relevancies are separately reviewed and, in a shift of the entire conceptual framework, it is not only scientists and medical professionals who assess the quality and relevance of research proposals but patients as well. This shift resulted in a significant increase of the involvement of patients, as well as its efficiency, in lung research.

The results of the study show how a government initiative and an approach by a patient organisation may lead to an increase of patient involvement in a research cycle. On the other hand, the study identified weaknesses and inefficiencies regarding patients’ involvement. It was found that the process requires “believers,” meaning motivated patients supported by dedicated staff and researchers. The study of Longfonds reveals practical solutions, as well as best and worst practices which can be useful for other patient organisation and fund raising organisations in other countries.

The following list is an attempt to summarise those recommendations:

  • Commitment for patient involvement
  • Well trained patient advocates
  • Systematic gathering of up to date patient group information
  • Allocated budget
  • Suitable assessment tools
  • Specific procedure and criteria for patient involvement

The original article on Health is available online and can be found on SCIRP webpage here.

 

Allergyweek in Finland

The Finnish Allergy and Asthma Federation is getting ready to its yearly campaign, Allergyweek. This year’s theme is ‘We are sensitive people. Allergy is not looking at your profession.’ The idea behind this slogan is that anyone can become allergic, no matter what’s the profession, age or living area.

During the campaign week there will be visible street advertising in the biggest cities. A press release is sent to the national media – normally spring is also otherwise the busiest time for the media visibility because of the pollen season. Local allergy and asthma associations organize over 100 events during the week.

In past years Allergyweek concentrated only on the starting pollen season with the message ‘time to start your allergy medication.’ Last year campaign changed its visual look into more shocking, and also the message was changed: We are a sensitive nation. Take care of yourself and the ones near to you. However, targets are still the same: to receive attention and to get new members.

Allergyweek is on Facebook and it has its own website, www.allergiaviikko.fi offering information of allergy and professions, listing all the Allergyweek events around Finland and introducing the campaign sponsors. Most of the campaign costs are covered by sponsors.

EFA eZine Archive