Partnership is a collaborative and equal relationship between partners such as patients, members of the public, clinicians, researchers and policy makers. It is based on the mutual recognition of the complementarity of knowledge, whether scientific or experiential, i.e. derived from the experience of living with the disease.
The CEPPP supports the work of the various partners, in particular by means of an information watch developed by the Partnership Lab in order to disseminate knowledge to the community and maximize joint learning.
In this perspective, we offer you 7 must read articles to better understand and implement the partnership with patients and the public.
1. Le Montréal Model : enjeux du partenariat relationnel entre patients et professionnels de la santé
Pomey Marie-Pascale, Flora Luigi, Karazivan Philippe et al., « Le « Montreal model » : enjeux du partenariat relationnel entre patients et professionnels de la santé », Santé Publique, 2015/HS (S1), p. 41-50. DOI : 10.3917/spub.150.0041. URL : https://www.cairn.info/revue-sante-publique-2015-HS-page-41.htm
Since 2010, a new rational model based on the partnership between patients and healthcare professionals has been developed at the University of Montreal’s Faculty of Medicine. This patient partnership model is based on the recognition of the patient’s experiential knowledge gained from living with a disease, which is complementary to the healthcare professional’s scientific knowledge. This partnership is part of a continuum of patient engagement and can be applied in healthcare, professional training, education, and research settings. This article describes the theoretical basis for patient partnerships and how this new model can be implemented in clinical, organizational and systemic levels, as well as the success factors for both patients and healthcare professionals.
2. What Are the Key Ingredients for Effective Public Involvement in Health Care Improvement and Policy Decisions? A Randomized Trial Process Evaluation
Boivin A, Lehoux P, Burgers J, Grol R. What are the key ingredients for effective public involvement in health care improvement and policy decisions? A randomized trial process evaluation. Milbank Q. 2014 Jun;92(2):319-50. doi: 10.1111/1468-0009.12060. PMID: 24890250; PMCID: PMC4089374.
In the past 50 years, individual patient involvement at the clinical consultation level has received considerable attention. More recently, patients and the public have increasingly been involved in collective decisions concerning the improvement of health care and policymaking. However, rigorous evaluation guiding the development and implementation of effective public involvement interventions is lacking. This article describes those key ingredients likely to affect public members’ ability to deliberate productively with professionals and influence collective health care choices.
3. Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement
Carman KL, Workman TA. Engaging patients and consumers in research evidence: Applying the conceptual model of patient and family engagement. Patient Educ Couns. 2017 Jan;100(1):25-29. doi: 10.1016/j.pec.2016.07.009. Epub 2016 Jul 22. PMID: 27473639.
This article discusses applying the Conceptual Framework for Patient and Family Engagement to partnerships with patients and consumers to increase their use of research evidence in healthcare decisions. The framework’s foundational principles hold that engagement occurs on a continuum across all levels of healthcare—from direct care to policymaking—with patients and healthcare professionals working in full partnership and sharing responsibility for achieving a safe, high-quality, efficient, and patient-centered healthcare system.
4. Patient engagement in research: a systematic review
Domecq, J.P., Prutsky, G., Elraiyah, T. et al. Patient engagement in research: a systematic review. BMC Health Serv Res 14,89 (2014). https://doi.org/10.1186/1472-6963-14-89
This systematic review seeks to answer four key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement?
This review is based on 142 studies that described a spectrum of engagement and highlights that patient engagement in health care research is likely to be feasible in many settings. However, this engagement comes at a cost and may, in some cases, become only tokenistic. Research devoted to identifying the best methods for achieving engagement is clearly needed, the authors conclude.
5. The Patient-as-Partner Approach in Health Care: A Conceptual Framework for a Necessary Transition
Karazivan P, Dumez V, Flora L, Pomey MP, Del Grande C, Ghadiri DP, Fernandez N, Jouet E, Las Vergnas O, Lebel P. The patient-as-partner approach in health care: a conceptual framework for a necessary transition. Acad Med. 2015 Apr;90(4):437-41. doi: 10.1097/ACM.0000000000000603. PMID: 25607943.
The prevalence of chronic diseases today calls for new ways of working with patients to manage their care. Although patient-centered approaches have contributed to significant advances in care and to treatments that more fully respect patients’ preferences, values, and personal experiences, the reality is that health care professionals still hold a monopoly on the role of healer.
Including patients as full partners in the health care team entails a significant shift in both the medical practice and medical education cultures. In this perspective, the authors describe this innovative approach to patient care, including the conceptual framework used in its development and the main achievements of patient partners in education, health care, and research.
6. Patient and service user engagement in research: a systematic review and synthesized framework
Shippee ND, Domecq Garces JP, Prutsky Lopez GJ, Wang Z, Elraiyah TA, Nabhan M, Brito JP, Boehmer K, Hasan R, Firwana B, Erwin PJ, Montori VM, Murad MH. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015 Oct;18(5):1151-66. doi: 10.1111/hex.12090. Epub 2013 Jun 3. PMID: 23731468; PMCID: PMC5060820.
There is growing attention towards increasing patient and service user engagement in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.
The article highlights those efforts to develop a strong evidence base on patient and service user engagement are limited by the non-standard and non-empirical nature of much of the literature. The authors propose a two-part framework that provides a standardized structure and language for reporting and indexing to support comparative effectiveness and optimize patient and service user engagement.
7. Evaluating Patient, Family and Public Engagement in Health Services Improvement and System Redesign
Abelson J, Humphrey A, Syrowatka A, Bidonde J, Judd M. Evaluating Patient, Family and Public Engagement in Health Services Improvement and System Redesign. Healthc Q. 2018 Dec;21(SP):61-67. doi: 10.12927/hcq.2018.25636. PMID: 30566406.
As efforts to actively engage patients, family members, and the general public in improving and redesigning health systems have intensified, increasing attention has also been given to assessing their engagement with the health system. This article discusses important concepts and approaches related to evaluation, with particular attention to the various potentially competing goals, stakeholders, and epistemological entry points. Evaluation itself can draw on a growing number of frameworks and tools appropriate to the purpose and approach in question. T he field of patient engagement evaluation faces many challenges, including the need to clarify the modalities and context of engagement, the need to balance the imperative of measurement with the relational aspects of care, and the aspiration of organizations with the capacity and willingness to realize and evaluate engagement.