The aim of Knowing disease: patients first project is to analyse the relationship between the oncological experience of disease/illness and the correspondent biomedical knowledge.
This research, carried out at Ipatimup and funded by Calouste Gulbenkian Foundation, was based on interviews with cancer patients, whose experiences, doubts and cancer illiteracy inspired the development of a series of booklets with the seal of the Portuguese Directorate General of Health.The booklets center around colon, esophagus, breast, prostate, lung, stomach, bladder and thyroid cancers. In order to overcome fears, myths and incomprehensible medical terms, they contain a clear, accessible and educational language.

history

Knowing disease: Patients first is the result of an international movement that started in 2008 in the USA and then extended to Europe in order to reposition patients as the focus of diagnostic procedures and treatment of “their” disease. The recognition of a lack of understanding – by practitioners and patients – regarding the complexity of pathological reports led to the production (by a group of pathologists from the Johns Hopkins University) of a Frequently Asked Questions (FAQs) list. The highest worldwide incidence of prostate, lung, breast, colon and oesophagus cancers was the key criterion for related biopsies and precursor lesions report clarifications. This was the baseline for the development of the project in Portugal.
The starting point of the Portuguese version of the project was the translation of the FAQs, which was done by pathologists of the São João Hospital Centre (Porto). The funding from the Calouste Gulbenkian Foundation in 2011 allowed us to reshape and expand the original US model, through the close collaboration with Sociology, Biomedicine and Civil Society. Health sociologists, experts involved in the diagnosis, monitoring and treatment of the various pathologies, patients and patient organisations are the agents involved in the process.
First hand encounters with the disease were reported through interviews performed with cancer patients. During this first phase of data-gathering interviewees were given a personalised FAQs list for later assessment in a second interview. The analysis of the narratives revealed weaknesses in health literacy, which conditions effective participation in the co-management of the disease.

AIMS AND METHODOLOGY

  • Produce a set of documents geared towards the particular characteristics of the pathologies within the project, in cooperation with all of the participants;
  • Establish a continuing collaboration between experts and patient groups for the production of accessible materials for non-specialists;
  • Contribute to creating conditions that enable patients to identify and understand medical terminology related to their clinical condition, particularly in pathology reports;
  • Raise awareness of the importance of an active participation in the trajectory of the disease, thereby encouraging the self-empowerment of patients;
  • Evaluate the use of the information materials produced within the project and their effects on the knowledge and empowerment of patients.

To fulfil these purposes, a qualitative research methodology was performed. Semi-structured interviews with 143 cancer patients provided the primary basis for the analysis. This strategy highlighted the need of the study to not be confined to the diagnosis alone, but broadened to other cancer dimensions that go beyond the medical scope. In order to complement the gathered information, interviews with clinicians and representatives from patient organisations were also conducted. The final validation process consisted of focus groups with the patients who had initially been interviewed in order to assess the possible need for the rewording of booklets prior to publication.

 

President of Ipatimup

While President of Ipatimup and member of the Board of Directors of i3S, it is hard for me to find a project to which I am best suited than “Knowing disease: Patients first”. Firstly, because I participated in the genesis of the original idea, as one of the four members of the European team who participated in the bilateral USA/Europe meeting on these issues that took place in 2008 in Sirmione, Italy. Secondly, and most importantly, because I have repeatedly witnessed the goodwill, enthusiasm and competence that Paula Silva, João Arriscado Nunes, Rui Mota Cardoso and many other professionals of the São João Hospital Centre and IPO-Porto have dedicated to this Project.
Health Sciences in general are well known for their trend towards “Interdisciplinarity” and this Project represents a superb example of such reality. The quality of the professionals involved in the different phases of the Project made it possible to wisely bring together patient organisations, psychologists, medical doctors, nurses, sociologists and nutritionists. Furthermore, possibly without being aware of it, these professionals applied the five principles that Deletic and Wong postulated in their seminal paper: “How to catalyse collaboration”*. In this way, Paula Silva and her team were able to reach the aims they had set out to achieve. For my part, I can only thank them and await the implementation results.
 
*The five principle for those of you who are interested: 1. Forge a shared mission; 2. Develop T-shaped researchers; 3. Nurture constructive dialogue; 4. Give institutional support; 5. Bridge research, policy and practice (Nature 525:315-317, 17 September 2015).

 

Rui Mota Cardoso

Carl Friedrich von Weizsäcker, a German medical doctor and philosopher, defined what he considered to be the “fundamental medical act” in medicine: “a Man is ill, possessed by discouragement, feels the need to be helped and therefore calls for the medical doctor. i
This call for help goes beyond the fight for physical integrity. It is the patient’s individuality that is at risk, is reacting and in distress; the patient asks for help in order to protect his/her physical integrity, as well as his/her physiologic, social, moral, spiritual and human wholeness. This call for help intends to preserve autonomy, already lost in the act of needing help, to protect self-determination and the right to know and decide. In fact, to defend his/her dignity.    
In sum, patients seek (1) Physical, physiologic and social integrity; (2) Safety, perhaps the most anguishing need; (3) Control of the situation and stress cause by it; (4) Information and decision-making; (5) Dignity; and (6) Autonomy, the major sign of a healthy individual.
If a medical doctor faces a disease, the patient faces a drama. Accordingly, the clinical act treats the disease while it treats the patient. And this type of care implies entering thepatient’s world of pain, understanding his/her fears, beliefs, weaknesses and resiliencies, respecting his/her autonomy and providing tools for self-control.
“Knowing disease: Patients first” has this dual objective.

i von Weiszaecker. Artz und Kranker.  Stuttgart. 1942.

The project also includes the active contribution of patient organisations. Their mission in promoting health and supporting patients, their families and caregivers, makes them interactive and comprehensive platforms in the sharing of information and experiences. This has a guaranteed positive effect on the disease. Continuing with the already implemented teamwork, this space aims to make known the patient associations that are related to the pathologies included in the project. Any queries and/or questions should be addressed to them directly. They will be available to provide the appropriate assistance.

 

AME E VIVA A VIDA
Associação de Mulheres Mastectomizadas

Av. Ceuta Norte, Quinta do Loureiro Lote 6 - Lj 3 1350-410 Lisboa
309 801 463 / 969 628 996

www.ameevivaavida.pt
ammamevivavida@hotmail.com
www.facebook.com/amevivavida

 

ASSOCIAÇÃO DE DOENTES DA TIRÓIDE

Rua Dr. Ricardo Jorge, 55 1o C 4050-514 Porto

adti.pt
info@adti.pt
www.facebook.com/adtiroide

 

ASSOCIAÇÃO PORTUGUESA DE OSTOMIZADOS

Av. João Paulo II, Lote 552 - 2oB, 1950-154 – Lisboa Travessa de Beirolas n.o 22 - A, 1800-030 Lisboa
218 310 587/ 218 596 454
2a a 5a feira: 10h-13h e 14h-17h; 6a feira: 10h-13h

www.apostomizados.pt
informacoes@apostomizados.pt
www.facebook.com/APOstomizados

 

APDPRÓSTATA
Associação Portuguesa de Doentes da Próstata

Praça Mota Veiga, lote O, S/ Cave, Esq. 1800-280 Lisboa
Geral: 915 335 286 / 211 913 437 Região Norte: 964 741 014
Linha de Apoio: 918 075 035 (de 2a a 6a entre as 14h e as 18h)
918 185 052 (de 2a a 6a entre as 16h e as 22h)

www.apdprostata.com
apdp@apdprostata.com

 

EUROPACOLON PORTUGAL
Apoio ao doente com cancro digestivo

Estrada Interior da Circunvalação, 6657 1o andar - Sala 145, 4200-177 - Porto
225 400 441 / 915 785 590 Linha de Apoio: 808 200 199

www.europacolon.pt
geral@europacolon.pt
www.facebook.com/EuropacolonPortugal

 

EVITA
Associação de Apoio a portadores com Alterações nos Genes Relacionados com Cancro Hereditário

 

962 003 510

www.evitacancro.org
info@evitacancro.org
www.facebook.com/evitacancro

 

LAÇO
Associação de Solidariedade Social

Rua dos Encontros da Luz, 27 loja,
Adroana 2645-628 Alcabideche

www.laco.pt
laco_portugal@laco.pt
www.facebook.com/laco.portugal

 

LIGA PORTUGUESA CONTRA O CANCRO

808 255 255 (dias úteis, 9h-20h)

www.ligacontracancro.pt

 

PULMONALE
AssociaçãoPortuguesa de Luta Contra o Cancro do Pulmão

Rua Júlio Dinis, 247, 3o Piso, sala E4
4050-324 Porto
220 946 887 | Telemóvel: 913 850 272

www.pulmonale.pt
geral@pulmonale.pt
ajuda@pulmonale.pt
www.facebook.com/pulmonale

 

VIVA MULHER VIVA
Associação para o Bem-Estar e Qualidade de Vida das Mulheres com Cancro da Mama

Hospital de São José (Piso Intermédio)
Rua José António Serrano
1150-199 Lisboa
218 841 443

www.vivamulherviva.org
vivassoc@chlisboa-zc.min-saude.pt
www.facebook.com/vivamulherviva

"There is indeed an almost insurmountable abyss between scientific-technical knowledge and patients. And that's why this association, that we are part of, has this motto: Nothing about us without us! It's a fantastic motto that should be set in motion."
Patients' Association Member
 
"What is an adenocarcinoma, an epidermoid carcinoma, a clear cell carcinoma? The patient goes to the internet, goes to the dictionary and ends up knowing ... But what does this really mean for him/her? If what is written there is malignant tumor or benign tumor, that really has a meaning.
Clinician
 

The project development included booklets construction for the eight malignant pathologies addressed. This collaborative work, conducted under Sociology coordination, brought together experiential and biomedical knowledge. Oncological patients and health professionals, namely pathologists, clinicians, nutritionists and psychologists, took part in that process. The enclosure of personal and social dimensions resulting from cancer patients´ experience represents an innovative approach concerning the production of informative health material. Without undermining scientific contents, our purpose was to adopt simple and objective language.