scholarly journals Health professionals’ expectations of a national patient portal for self-management

2018 ◽  
Vol 117 ◽  
pp. 82-87 ◽  
Author(s):  
Sari Kujala ◽  
Iiris Hörhammer ◽  
Johanna Kaipio ◽  
Tarja Heponiemi
2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 1288.1-1289
Author(s):  
I. Mcnicol ◽  
A. Bosworth ◽  
C. Jacklin ◽  
J. Galloway

Background:NRAS follows best practice, evidence-based standards in all we do. Whilst huge strides have been made in the diagnosis and treatment of RA, the impact on quality of life can be significant and for many this disease remains hard to come to terms with. NRAS services and resources can improve the outcomes of people with RA/Adult JIA through a framework of supported self-management resources tailored to individual need. It is particularly important to provide the right support at the beginning of a person’s journey with RA, when unhelpful health beliefs, anxiety and incorrect information can influence how someone responds to prescribed medication and treatment thus impeding their ability to achieve the best outcomes. We know, for example, that many people do not take their medication as prescribed which reduces their chances of achieving remission or low disease activity state.Objectives:To demonstrate that by referring patients online as part of a quality improvement programme to NRAS Right Start Service, we can show improved outcomes for patients with early RA when measured by the MSKHQ. Referred patients will benefit by: a) Better understanding what RA is; b) knowing how it can affect them; c) getting the right support; d) feeling more in control; receiving a tailored pack of information that meets their personal needs; e) be able to talk to a like-minded person who has lived with RA. It’s a 4 step process which starts with the health professional referring their patient to NRAS on line. NICE Quality Standard 3 states that “Adults with rheumatoid arthritis are given opportunities throughout the course of their disease to take part in educational activities that support self-management.” Our service enables health professionals to meet their responsibilities against this national quality standard.Methods:In preparation for the introduction of this service at BSR congress 2019, an audit of the NRAS helpline service was undertaken at the end of 2018 and remains on going. Currently we have 224 responses which have been analysed against specific criteria. An Advisory Board comprising 7 clincians, from different hospitals was appointed to work with NRAS on this important research.Results:In the helpline audit, when asked ‘how concerned are you about your disease’?, alarmingly, 78% of those surveyed scored their level of concern about their disease at 7 or higher out of 10, while only 8% scored it at 5 or below. When asked about the emotional effects of their RA, 62% scored it as 7 or more where 10 was the worst possible impact. 94% of survey respondents said that they would definitely or very likely recommend NRAS and its services to another person. These results led to the development of New2RA Right Start launched in 2019, whereby health professionals across the UK can refer their patients directly to NRAS via a consented online referral which is fully GDPR compliant. To date (31stJan, 2020), we have made calls to 101 patients, from 24 referring hospitals of which 55 have been successfully completed, 34 have had information sent through the post although our helpline team were unable to speak to them, and 12 remain open. Data analysis on the service is being carried out by King’s College Hospital London, comparing the results of patients who have been referred to Right Start within the national audit who have completed a baseline and 3 month follow up MSKHQ and patients in the audit who have not participated in Right Start.Conclusion:Anecdotally, we have had a tremendous response to this service from both patients and referring health professionals. We await data from King’s on the above figures, which we will have within the next 2 months and further data, should this abstract be accepted, will be available prior to June 2020. Right Start enables health professionals to comply with QS3 above, of the NICE Quality Standards in RA, one of the key standards against which they are being audited in the NEIAA national audit. Once data and write up in a peer review journal has been published we plan to roll this service out to people with more established disease.References:[1]To be done, not included in word count.Acknowledgments:I would like to thank Ailsa Bosworth MBE, Clare Jacklin, and James GallowayDisclosure of Interests:Iain McNicol Shareholder of: GSK, Ailsa Bosworth Speakers bureau: a number of pharmaceutical companies for reasons of inhouse training, advisory boards etc., Clare Jacklin Grant/research support from: NRAS has received grants from pharmaceutical companies to carry out a number of projects, Consultant of: I have been paid a speakers fee to participate in advisory boards, in house training of staff and health professional training opportunities, Speakers bureau: Various pharma companies, James Galloway: None declared


2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Daisuke Uritani ◽  
Hitoshi Koda ◽  
Sho Sugita

Abstract Background Enhancing self-efficacy to manage symptoms and functions is an important aspect of self-management for patients with knee osteoarthritis (OA). Many reports have investigated the effects of self-management education programmes for arthritis patients. However, a study that exclusively focuses on patients with OA in the same joints is required to clarify the effects of self-management programmes because individuals with knee OA experience physical and psychological difficulties different from those experienced by individuals with other arthritis diseases. Furthermore, previous studies have reported a wide range of delivery styles of self-management education programmes. This systematic review aimed to evaluate the effects of group-based and face-to-face self-management education programmes conducted by health professionals targeting self-efficacy for knee OA exclusively. Methods The MEDLINE, CENTRAL, EMBASE, CINAHL, Web of Science, and PEDro databases were searched to identify quantitative measures used in randomised controlled trials (RCTs) to assess the effects of self-management education programmes targeting self-efficacy in patients with knee OA. We included studies in which medical professional-delivered self-management education programmes were conducted in a group-based and face-to-face manner in community or outpatient settings. Results Seven RCTs from five countries were included in this review. Our retrieved studies included various types of self-management education programmes such as cognitive behavioural counselling, pain management education, physical education, weight management education, and arthritis self-efficacy management education, and control arms. They assessed various aspects of self-efficacy, including pain, physical function, arthritis symptoms excluding pain, weight management, mobility, and self-regulation. The total score of the Arthritis Self-Efficacy Scale was also measured. Some studies have reported beneficial effects of group-based and face-to-face self-management education programmes on self-efficacy for management of pain and other symptoms and for self-regulatory, knee OA. However, the results of the included studies were varied and inconsistent. Conclusions The current review only included seven studies, and there was a wide range of clinical heterogeneity among these studies. Thus, the effects of group-based and face-to-face self-management education programmes conducted by health professionals on self-efficacy for knee OA exclusively are inconclusive to date. Therefore, high-quality studies are required to provide significant information on clinicians, patients, and healthcare professionals in the future.


Author(s):  
Amanda Cabral ◽  
Kathleen R. Bonaventura ◽  
Kerry A. Milner

2019 ◽  
Vol 11 (1) ◽  
Author(s):  
Bronte Jeffrey ◽  
Melina Bagala ◽  
Ashley Creighton ◽  
Tayla Leavey ◽  
Sarah Nicholls ◽  
...  

Abstract Background Mobile phone applications (apps) have been shown to successfully facilitate the self-management of chronic disease. This study aims to evaluate firstly the experiences, barriers and facilitators to app usage among people with Type 2 Diabetes Mellitus (T2DM) and secondly determine recommendations to improve usage of diabetes apps. Methods Participants were aged ≥ 18 years with a diagnosis of T2DM for ≥ 6 months. Semi-structured phone-interviews were conducted with 16 app and 14 non-app users. Interviews were based on the Technology Acceptance Model, Health Information Technology Acceptance Model (HITAM) and the Mobile Application Rating Scale. Data were analysed using deductive content analysis. Results Most app-users found apps improved their T2DM self-management and health. The recommendation of apps by health professionals, as well as positive interactions with them, improved satisfaction; however, only a minority of patients had practitioners involved in their app use. All non-app users had never had the concept discussed with them by a health professional. Facilitators to app use included the visual representation of trends, intuitive navigation and convenience (for example, discretion and portability). Barriers to app use were participant’s lack of knowledge and awareness of apps as healthcare tools, perceptions of disease severity, technological and health literacy or practical limitations such as rural connectivity. Factors contributing to app use were classified into a framework based on the Health Belief Model and HITAM. Recommendations for future app design centred on educational features, which were currently lacking (e.g. diabetes complications, including organ damage and hypoglycaemic episodes), monitoring and tracking features (e.g. blood glucose level monitoring with trends and dynamic tips and comorbidities) and nutritional features (e.g. carbohydrate counters). Medication reminders were not used by participants. Lastly, participants felt that receiving weekly text-messaging relating to their self-management would be appropriate. Conclusions The incorporation of user-centred features, which engage T2DM consumers in self-management tasks, can improve health outcomes. The findings may guide app developers and entrepreneurs in improving app design and usability. Given self-management is a significant factor in glycaemic control, these findings are significant for GPs, nurse practitioners and allied health professionals who may integrate apps into a holistic management plan which considers strategies outside the clinical environment.


2020 ◽  
Vol 26 (4) ◽  
pp. 2586-2596
Author(s):  
Kathy K Marsh ◽  
Ruth A Bush ◽  
Cynthia D Connelly

Emerging adults have been raised in the digital age and are therefore prime candidates for using a patient portal to manage chronic conditions. The limited body of research both identifies the underutilization of the patient portal and suggests increased use of the portal for the chronically ill as a tool to alleviate caregiver stress, as well as a potential modality to assist emerging adults to manage their chronic illnesses. This qualitative study was completed to obtain an understanding of emerging adults familiarity with the electronic patient portal and to elicit the perception of the usefulness of the portal to support self-management of type I diabetes. Findings provide a preliminary understanding of how a sampling of emerging adults with type I diabetes uses, perceives the benefits of, and wants to improve technology for diabetes self-management.


2020 ◽  
Vol 40 (1) ◽  
pp. 12-25 ◽  
Author(s):  
Talia Gutman ◽  
Karine E Manera ◽  
Amanda Baumgart ◽  
David W Johnson ◽  
Martin Wilkie ◽  
...  

Background: Recognition of the discrepancy between the research priorities of patients and health professionals has prompted efforts to involve patients as active contributors in research activities, including scientific conferences. However, there is limited evidence about the experience, challenges, and impacts of patient involvement to inform best practice. This study aims to describe patient and health professional perspectives on patient involvement at the Congress of the International Society for Peritoneal Dialysis (ISPD). Methods: Semi-structured interviews were conducted with 14 patients/caregivers and 15 health professionals from six countries who attended ISPD. Interviews were recorded and transcribed verbatim, and transcripts were analyzed thematically. Results: We identified four themes: protecting and enhancing scientific learning (grounding science in stories, sharing and inspiring new perspectives, distilling the key messages of research presentations, striking a balance between accommodating patients and presenting the science); democratizing access to research (redistributing power, challenging the traditional ownership of knowledge, cultivating self-management through demystifying research); inadequate support for patient/caregiver delegates (lacking purposeful inclusion, challenges in interpreting research findings, soliciting medical advice, difficulty negotiating venue and program, limited financial assistance in attending); and amplifying impact beyond the room (sparking innovation in practice, giving patients and families hope for the future). Conclusions: Patient involvement at the ISPD Congress clarified the applicability of research to patient care and self-management, democratized science, and strengthened the potential impact of research. More structured support for patients to help them purposefully articulate their experience in relation to session objectives may enhance their contribution and their own learning experience.


BMJ Open ◽  
2020 ◽  
Vol 10 (4) ◽  
pp. e032762
Author(s):  
Ruth Ndjaboue ◽  
Selma Chipenda Dansokho ◽  
Bianca Boudreault ◽  
Marie-Claude Tremblay ◽  
Maman Joyce Dogba ◽  
...  

ObjectivePeople living with diabetes need and deserve high-quality, individualised care. However, providing such care remains a challenge in many countries, including Canada. Patients’ expertise, if acknowledged and adequately translated, could help foster patient-centred care. This study aimed to describe Expert Patients’ knowledge, wisdom and advice to others with diabetes and to health professionals to improve diabetes self-management and care.Design and methodsWe recruited a convenience sample of 21 men and women. Participants were people of diverse backgrounds who are Patient Partners in a national research network (hereafter Expert Patients). We interviewed and video-recorded their knowledge, wisdom and advice for health professionals and for others with diabetes. Three researchers independently analysed videos using inductive framework analysis, identifying themes through discussion and consensus. Expert Patients were involved in all aspects of study design, conduct, analysis and knowledge translation.ResultsAcknowledging and accepting the reality of diabetes, receiving support from family and care teams and not letting diabetes control one’s life are essential to live well with diabetes. To improve diabetes care, health professionals should understand and acknowledge the impact of diabetes on patients and their families, and communicate with patients openly, respectfully, with empathy and cultural competency.ConclusionExpert Patients pointed to a number of areas of improvement in diabetes care that may be actionable individually by patients or health professionals, and also collectively through intergroup collaboration. Improving the quality of care in diabetes is crucial for improving health outcomes for people with diabetes.


Author(s):  
Marise S. Kaper ◽  
Andrea F. de Winter ◽  
Roberta Bevilacqua ◽  
Cinzia Giammarchi ◽  
Anne McCusker ◽  
...  

Many professionals have limited knowledge of how to address health literacy; they need a wider range of health literacy competencies to enhance empowerment and person-centred prevention. We evaluated whether: (1) a comprehensive health literacy training increased self-rated competencies of health professionals to address health literacy related problems and support the development of people’s autonomy and self-management abilities after training and 6–12 weeks later, (2) professionals were satisfied with the training, (3) outcomes differed for the three participating European countries. Health professionals (N = 106) participated in a multicentre pre-post intervention study in Italy, the Netherlands and Northern Ireland. The 8-hour training-intervention involved health literacy knowledge, the practice of comprehensible communication skills, shared decision-making, and enhancing self-management. Self-rated health literacy competencies and training satisfaction were assessed at baseline, immediately after training and 6-12 weeks later, and analysed by multi-level analysis. Professionals’ self-rated health literacy competencies significantly improved following training in all three countries; this increase persisted at 6-12 weeks follow-up. The strongest increase regarded professional’s skills to enhance shared-decision making and enabling self-management after training and follow-up respectively. Professionals perceived the training as relevant for practice. Competency increases seemed to be consistent across countries. In three countries, professionals’ self-rated health literacy competencies increased following this comprehensive training. These promising findings should be confirmed in a further full effect study. Implementation of this training in European education and health care may improve person-centred communication by professionals and might help to tackle health literacy related problems and to strengthen people’s abilities in achieving better health outcomes.


2014 ◽  
Vol 41 (1) ◽  
pp. 38-42
Author(s):  
Joni K. Beck ◽  
Sheryl E. Traficano

Purpose The purpose of this article is to describe the Diabetes Educator Mentorship Program, communicate mentors’ experiences and perceptions during the first 3 years following implementation, and provide strategies to encourage mentoring. Conclusions Creation of this collaborative program has fostered successful attainment of additional certified diabetes educators who obtained diabetes self-management education and support (DSMES) practice requirement hours through a voluntary Diabetes Educator Mentorship Program. There is a significant need for additional mentors to meet the growing need for mentoring partnerships. Increasing the number of mentors will provide more opportunities to those seeking to gain DSMES experience and will ultimately expand the number of health professionals available to educate those with diabetes or prediabetes.


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