'Doing' hypertension: Experiential knowledge and practice in the self-management of 'high blood' in the Philippines.

Patients' embodied experiences do not always correspond to the biomedical concepts of particular diseases. Drawing from year-long fieldwork in the Philippines that involved semi-structured interviews, focus group discussions and digital diaries, we examine how individuals 'do' hypertension through their embodied experiences and the knowledge and practice that emerge from them. Drawing inspiration from Annemarie Mol's work on the notion of 'multiplicity' of disease, our analysis was informed by a commitment to privileging patients' embodied experiences and the multiple ontologies of hypertension. We find that for patients diagnosed with hypertension in the Philippines, symptoms enact illness; patients rely on their own embodied knowledge to define their illness' nature (e.g., diagnosis), experience (e.g., frequency of symptoms and non-chronicity) and praxis (e.g., self-care practices). We show how this knowledge gained from having embodied experiences of living with the disease interacts in various ways with biomedical knowledge, other diagnostic labels and clinical practices, to shape how hypertension manifests and is managed by patients. Beyond interrogating the relationship between what counts as a 'disease' and what is considered a 'symptom', our findings underscore the need to pay attention instead to the mutually co-constitutive processes of embodied experiences and disease categories in co-producing patient knowledge.

The Benefits of Patient Involvement for Translational Research.

The question we raise in this paper is, whether patient involvement might be a beneficial way to help determine and achieve the aims of translational (TR) research and, if so, how to proceed. TR is said to ensure a more effective movement ('translation') of basic scientific findings to relevant and useful clinical applications. In view of the fact that patients are supposed to be the primary beneficiaries of such translation and also have relevant knowledge based on their experience, listening to their voice early on in the innovation process might very well increase the effectiveness of the translation. After explaining how the concept of TR emerged and what it entails, this paper shows through a literature review which arguments have been put forward to promote patient involvement in health care research in a more general sense. We examine whether, and if so how, these arguments are relevant for the discourse on TR and we identify pitfalls and dilemmas. Ultimately, we conclude that it may be worthwhile to experiment with patient involvement in TR but that the design of such involvement requires careful consideration.

Opportunities for Engaging Patients in Kidney Research.

PURPOSE: The purpose of this review is to provide a summary of the rationale for engaging patients in research as well as to review the established and envisioned advantages and strategies for patient-researcher partnerships. The authors of this article, which include a patient and 4 researchers in kidney disease, discuss the expected benefits and opportunities for patient engagement in their respective research programs. The 4 research programs span the spectrum of kidney disease and focus on enhancing bone health, increasing living donor kidney transplants, improving medication adherence, and preventing kidney transplant rejection. SOURCES OF INFORMATION: The sources of information for this review include published studies on the topics of patient engagement and the 4 research programs of the new investigators. KEY FINDINGS: (1) Patient, health care provider, and researcher partnerships can contribute useful insights capable of enhancing research in kidney disease. (2) Regardless of the research program, there are various strategies and opportunities for engagement of patients with lived experience across the various stages of research in kidney disease. (3) Envisioned advantages of patient-researcher partnerships include: targeting patient-identified research priorities, integrating patients' experiential knowledge, improving study design and feasibility through patient-researcher input, facilitating dissemination of research findings to other patients, effectively responding to patient concerns about studies, and inspiring researchers to conduct their research. LIMITATIONS: The limitations of the current review include the relative scarcity of literature on patient engagement within the field of kidney disease. IMPLICATIONS: The findings of the current review suggest that it will be important for future studies to identify optimal strategies for patient engagement in setting research priorities, study design, participant recruitment, execution of research projects, and knowledge dissemination and translation.

OBJET: Le but de cet article synthèse est de fournir un résumé des raisons justifiant de faire participer les patients à la recherche. On veut également examiner les avantages établis et envisagés, de même que les stratégies de partenariats patients-chercheurs. Les auteurs de cet article, un patient et quatre chercheurs dans le domaine des maladies rénales, discutent des bénéfices espérés et des débouchés attendus de l'implication des patients dans leurs programmes de recherche respectifs. Les quatre programmes de recherche étudiés couvrent un spectre étendu dans le domaine des maladies du rein, et se concentrent sur l'amélioration de la santé osseuse, l'augmentation du nombre de greffes provenant de donneurs vivants, l'amélioration de l'observance à la médication et la prévention du rejet de la greffe. SOURCES: Les sources consultées comprennent les recherches publiées sur le thème de la participation des patients en recherche et sur les quatre programmes de recherche des chercheurs participants (amélioration de la santé osseuse, augmentation du nombre de greffes provenant de donneurs vivants, amélioration de l'observance à la médication et prévention du rejet de greffe). PRINCIPALES CONCLUSIONS: (1) Les partenariats entre les patients, les professionnels de la santé et les chercheurs peuvent apporter de précieuses informations susceptibles de faire avancer la recherche sur les maladies rénales. (2) Peu importe le programme de recherche, il existe plusieurs stratégies et possibilités pour encourager la participation de patients et le partage de leur expérience lors des différentes étapes de la recherche sur les maladies rénales. (3) On discute des nombreux avantages attendus des partenariats patients-chercheurs, notamment le ciblage des priorités de recherche établies par les patients, l'intégration des connaissances tirées de l'expérience des patients, l'amélioration de la conception et de la faisabilité des études par les apports des patients et des chercheurs, la diffusion facilitée des résultats de la recherche auprès des autres patients, la réponse efficace aux soucis des patients en regard des études, et la source de motivation fournie aux chercheurs pour la poursuite de leurs études. LIMITES DE L'ÉTUDE: Les résultats sont limités par le fait qu'il existe peu de recherches ayant porté sur la participation des patients à la recherche sur les maladies rénales. IMPLICATIONS: Les résultats de cette étude suggèrent qu'il sera important pour les études ultérieures de définir les stratégies optimales favorisant la participation des patients lors de l'établissement des priorités de recherche, de la conception de l'étude, du recrutement des participants, de l'exécution des projets de recherche et au moment de la diffusion et du transfert des connaissances.