Identifying Potential Barriers and Solutions to Patient Partner Compensation (Payment) in Research

Research that engages patients on the research team is often supported by grant funding from different organizations and, in some cases, principal investigators (who control the grant funding) provide patient partners with compensation (or payment) for their contributions. However, we have noted a gap in resources that identify and address barriers to compensating patient partners. In this paper, we present thoughts and experiences related to barriers to compensating patient partners with the goal of helping individuals identify and find solutions to these obstacles.Based on our experiences as individuals who live with chronic conditions and are patient partners, and those who are researchers who engage patient partners, we have identified eight barriers to compensating patient partners. We discuss each of these barriers: lack of awareness about patient partnership, institutional inflexibility, policy guidance from funders, compensation not prioritized in research budgets, leadership hesitancy to create a new system, culture of research teams, preconceived beliefs about the skills and abilities of patient partners, and expectations placed on patient partners. We demonstrate these barriers with real life examples and we offer some solutions. To further demonstrate these barriers, we ask readers to reflect on some scenarios that present realistic parallel situations to those that patient partners face. The intention is to illustrate, through empathy or putting yourself in someone else’s shoes, how we might all do better with respect to institutional barriers related to patient partner compensation. Last, we issue a call to action to share resources and identify actions to overcome these barriers so we can create a resource hub.

Lifestyle Factors and Obesity

Obesity, with growing prevalence around the world, is a disease and a major risk factor for noncommunicable diseases and death. Lifestyle medicine integrates modern lifestyle practices with scientific evidence-based medicine in order to lower risk factors for chronic diseases and to support therapy if the disease is already present. Considering adiposity-based chronic disease conceptual model and new abdominal obesity classification, this article intends to describe healthy lifestyle pillars that must be considered in obesity prevention and treatment. Right nutrition, regular physical activity, optimal sleep, moderation in alcohol consumption, absence of smoking, and mindfulness should be considered in the effort to prevent and treat obesity. Doctor-patient partnership, patient empowerment, and doctor as a role model will complete the basic principle of lifestyle medicine.

Knowledge of disease, diagnosis, adherence and impact of research in an Irish cohort of patients with inflammatory arthritis

Background: Patient engagement with clinicians results in shared decision making and increased adherence to medication. However, in order for strong patient: clinician partnerships to be achieved, communication barriers need to be identified. Therefore, the aim of this study was to examine the level of understanding of inflammatory arthritis patients and the need for strong patient-partnership in research. Methods: An online anonymous survey was distributed to patients living with inflammatory arthritis which addressed questions about diagnosis, routine tests, medications and how they work, medication adherence, disease flare, heredity, pregnancy, and patient involvement in research. Results: There were 1,873 respondents, 1416 of which had inflammatory arthritis (IA)- rheumatoid arthritis (RA) (65.8%) and psoriatic arthritis (PsA) (34.2%). They were predominantly female (RA 86%, PsA 85 %), aged 55±13 and 50±12 years. Less than 35% of patients had an understanding of diagnostic tests, what was measured and the implication for disease, with 75.5% also concerned about heredity. There was a high level of understanding of how specific medications treat inflammatory arthritis (72.9%). Adherence was also very high (>87%), with the main reasons for stopping medication without the advice of their clinician, ‘feeling better’ and ‘side effects’ however a significant proportion of patients (69.9%) reported a disease-flare following cessation of medication. Patients (31%) were also concerned that inflammatory arthritis reduced their chances of getting pregnant, with only 8% believing arthritis medications were safe to take during pregnancy. Finally, only 9% of patients had ever been asked to participate in a research study. Conclusions: This study demonstrates a need for the development of stronger patient-partnerships with clinicians and researchers in relation to patient education and engagement with research, to create a platform where patients can have meaningful input and involvement in future research studies.

Medical emergency: rash, headache and spinal cord injury

A 49-year-old consultant medical oncologist, with a medical history of complete T5 spinal cord injury (March 1992) and long-term paralysis from the chest down, presented with shingles affecting the T7 dermatome. He also had a dull frontal headache, a feeling of agitation and increased blood pressure of 135/90 on a home blood pressure machine (higher than his usual blood pressure of 90/70). Having been taught about autonomic dysreflexia at the time of his initial spinal cord injury, he self-diagnosed autonomic dysreflexia caused by the noxious stimulus of shingles below his level of spinal cord injury. He self-administered a nifedipine 5 mg sublingual capsule to decrease his blood pressure before urgently seeing his general practitioner. Treatment of the shingles with acyclovir and analgesia successfully managed the problem and avoided hospital admission. This case highlights key aspects in treating autonomic dysreflexia and the value of doctor–patient partnership in doing so.

Hospital practices for the implementation of patient partnership in a multi-national European region

Background The extent to which patients are involved in their care can be influenced by hospital policies and interventions. Nevertheless, the implementation of patient participation and involvement (PPI) at the organisational (meso) level has rarely been assessed systematically. The aim of this study was to assess the occurrence of PPI practises in hospitals in Belgium, France, Germany and Luxembourg and to analyze if, and to what extent, the hospital vision and the presence of a patient committee influence the implementation of PPI practises. Methods A cross-sectional study was carried out using an online questionnaire in hospitals in the border regions of the four countries. The data were analyzed for differences between regions and the maturity of PPI development. Results Full responses were obtained from 64 hospitals. A wide range of practices were observed, the degree of maturity was mixed. A majority of hospitals promoted patient partnership in the hospital’s philosophy of care statement. However, the implementation of specific interventions for PPI was not found uniformly and differences could be observed between the countries. Conclusions Hospitals in the region seem to be motivated to include patients more fully, however, implementation of PPI interventions seems incomplete and only partially integrated into the general functioning of the hospitals. The implementation of the concept seems to be more mature in the francophone part of the region perhaps due, in part, to a more favourable political context.