Can I help you? Information sharing in online discussion forums by people living with a long-term condition.

BACKGROUND: Peer-to-peer health care is increasing, especially amongst people living with a long-term condition. How information is shared is, however, sometimes of concern to health care professionals. OBJECTIVE: This study explored what information is being shared on health-related discussion boards and identified the approaches people used to signpost their peers to information. METHODS: This study was conducted using a qualitative content analysis methodology to explore information shared on discussion boards for people living with diabetes. Whilst there is debate about the best ethical lens to view research carried out on data posted on online discussion boards, the researchers chose to adopt the stance of treating this type of information as "personal health text", a specific type of research data in its own right. RESULTS: Qualitative content analysis and basic descriptive statistics were used to analyse the selected posts. Two major themes were identified: 'Information Sharing from Experience' and 'Signposting Other Sources of Information'.Conclusions People were actively engaging in information sharing in online discussion forums, mainly through direct signposting. The quality of the information shared was important, with reasons for recommendations being given. Much of the information sharing was based on experience, which also brought in information from external sources such as health care professionals and other acknowledged experts in the field.With the rise in peer-to-peer support networks, the nature of health knowledge and expertise needs to be redefined. People online are combining external information with their own personal experiences and sharing that for others to take and develop as they wish.

Self Management and Telehealth: Lessons Learnt from the Evaluation of a Dorset Telehealth Program.

BACKGROUND: Telehealth is one of the ways in which the UK health service is seeking to improve the care of people living with a long-term condition. One of the aims of its "3 million lives" program is to achieve more effective self care. A lot of the research into telehealth has focused on cost effectiveness, effective working practices, and barriers to adoption. Patient experience is frequently discussed in terms of the reassurance experienced from the support offered through telehealth systems. OBJECTIVE: This study reports the qualitative findings of an evaluation of a local telehealth program introduced by the Dorset Clinical Commissioning Group for patients with chronic obstructive pulmonary disease or chronic heart failure. METHODS: Twenty-nine patients participated in telephone interviews, held at the start of their telehealth experience and after they had been using the system for 3 months. Interviewees included people who had graduated from the telehealth system or had asked to come off it. Healthcare professionals, mainly nurses, involved in the management of patients using the system were also interviewed. RESULTS: The evaluation found that patients were using the telehealth equipment, often beyond the parameters of the formal telehealth scheme, to develop effective self-management techniques. CONCLUSION: These results have implications for policy makers, as removing the equipment when patients graduate as being self managing may mean removing the very tools that make that self management possible.

Innovation in Health Informatics: much is underpinned by eHealth and better information for patients.

Health informatics is a relatively young discipline, bringing together professionals with a range of backgrounds, including management professionals, computer specialists and health care professionals. A lot of focus has been on developing systems such as medical records and information sharing, and it also has the potential to span the boundaries between health care professionals and patients. This is especially true for people living with a long-term condition.

Telehealth as a tool for independent self-management by people living with long term conditions.

Telehealth is seen as a key component of 21st century healthcare, and studies have explored its cost effectiveness and impact on hospital admissions. Research has been carried out into how to best implement it, and the barriers to its adoption. The impact of telehealth on self-management however has been a neglected area. An evaluation of the implementation of a telehealth programme in one area in the South of England found that some patients were using the telehealth equipment provided to enhance their own self management abilities. Whilst the nurses managing the scheme felt that they had an education role they did not involve their patients in setting goals. The patients equally did not feel that were being educated by their nurses. Patients were using the monitoring equipment independently of the nurses and the scheme to support their self-management strategies. Therefore the concept of graduating from telehealth once good self-management is established needs to be rethought. Patients in this study experienced less face to face contact with their nurse, but also reported that they were happy with the changes. This suggests that for some patients the contact with the nurse may well be able to be reduced or withdrawn however removing the monitoring equipment will remove the very tools essential to continued self-management.

How people with diabetes integrate self-monitoring of blood glucose into their self-management strategies.

BACKGROUND: The benefit of self-monitoring of blood glucose by patients has been questioned, and UK policy is generally not to support this, although it is identified that there may be unidentified subgroups of people who would benefit from being supported to self-monitor. The purpose of this paper is to explore the self-management approaches of people with diabetes, and how self-testing of blood glucose contributes to self-management strategies. METHODS: This qualitative study of patients' experiences drew data from contributors to online discussion boards for people living with diabetes. The principles of qualitative content analysis were used on posts from a sample of four Internet discussion boards. RESULTS: Contributors described how they were using self-testing within their self-management strategies. Most saw it as a way of actively maintaining control of their condition. The amount of testing carried varied over time; more testing was done in the early days, when people were still learning how to stay in control of their diabetes. Some people had experienced a lack of support for self-testing from healthcare professionals, or had been expected to change their self-management to fit national policy changes. This was seen as unhelpful, demotivating, stressful, and harmful to the doctor-patient relationship. CONCLUSIONS: The Internet is a valuable source of information about peoples' self-management behaviours. Patients who are using, or who wish to use, self-testing as part of their self-management strategy are one of the subgroups for whom self-testing is beneficial and who should be supported to do so.

The conceptual and practical ethical dilemmas of using health discussion board posts as research data.

BACKGROUND: Increasing numbers of people living with a long-term health condition are putting personal health information online, including on discussion boards. Many discussion boards contain material of potential use to researchers; however, it is unclear how this information can and should be used by researchers. To date there has been no evaluation of the views of those individuals sharing health information online regarding the use of their shared information for research purposes. OBJECTIVE: To explore the views of contributors to online diabetes discussion boards with regards to if (and how) they feel their contributions to boards should be used by health researchers. METHODS: A qualitative approach was employed using online semistructured asynchronous (email) interviews. Interpretative description methodology was used to assess the interview transcripts, and quotations were extracted and anonymized to support each theme. RESULTS: 26 interviews were carried out. Participants agreed that forum posts are in the public domain and that aggregated information could be freely used by researchers. This was agreed to be a good way of ensuring that the view of people living with diabetes is being heard in research. There was no consensus on the need for permission to use individual information, such as quotations, with some people happy for this to be freely used and others feeling that permission is necessary. CONCLUSIONS: Participants acknowledged the dichotomy of having placed information into the public domain in an unrestricted way, with some interviewees also wanting to retain control of its use. The Internet is a new research location, and rather than trying to apply traditional ethical norms to this new genre, a new modus operandi is required. The authors propose introducing new norms for presenting research carried out with online discussion boards.

What e-patients want from the doctor-patient relationship: content analysis of posts on discussion boards.

BACKGROUND: People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards. OBJECTIVE: The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor's role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff. METHODS: The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories. RESULTS: The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors. CONCLUSIONS: People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor's function in terms of gatekeeping resources could create difficulties for them in this respect.

Surfing or still drowning? Student nurses' Internet skills.

A study into student nurses' ability to use the Internet was published in Nurse Education Today in 2004. This paper repeats the research with a cohort of students starting their pre-registration programme in a UK university in 2007. In 2004 students were reported as having poor Internet skills, and as not being frequent users of the Internet. In this study students were found to have significantly better ability to carry out basic tasks and significantly higher levels of Internet use. Their ability to apply these skills to more complex information literacy tasks however had not increased, with more than half of all students saying they found far too much irrelevant information when searching for specific information on the Internet. The earlier study found that skills and age were not related, which appears to still be the case. The need for these skills is increasing as education, lifelong learning, and patient information are all increasingly drawing on the developing Internet. Nurse education however is not integrating the skill and knowledge base essential to support this into pre-registration programmes, and the evidence suggests that this will not happen without active management.

Nurses, computers and pre-registration education.

Nursing informatics, the use of information and technology, to support the work of the nurse, is an essential part of the modern nurses' job. In the UK this is supported by a range of National Health Service policy documents over the past decade, starting with Information for Health in 1998. Research carried out over this period has however found that nurses lack the necessary skills and knowledge to use computers effectively, and that pre-registration education does not fully prepare student nurses for this aspect of the role of the nurse. This paper presents the results of a longitudinal study carried out with a cohort of nursing students, which found that although the students lacked computer skills and knowledge at the start of their programme they were willing to engage with this agenda. Two factors were found to be necessary for students to use the available IT on placement. One was a belief that they had the skills to use the computers; the other was a supportive environment that encouraged their use. Unfortunately only a minority of students reported that they had experienced a supportive environment.

Prescription for nursing informatics in pre-registration nurse education.

Nurses need to be able to use information and communications technology not only to support their own practice, but also to help their patients make best use of it. This article argues that nurses are not currently adequately prepared to work with information and technology through their pre-registration education. Reflecting the lack of nursing informatics expertise, it is recommended that all pre-registration nursing programmes should have access to a nursing informatics specialist. A prescription to meet the informatics needs of the newly qualified nurse is proposed. This places the areas that need to be included in pre-registration education into broad groups that both articulate the competencies that nurses need to develop, and indicate why they are needed, rather than providing context-free checklists of skills. This is presented as a binary scatter chart with two axes, skill to knowledge and technology to information.

Nurses and computers. An international perspective on nurses' requirements.

This paper reports the findings from a Florence Nightingale Foundation Travel Scholarship undertaken by the author in the spring of 2006. The aim of the visit was to explore nurses' attitudes towards, and experiences of, using computers in their practice, and the requirements that they have to encourage, promote and support them in using ICT. Nurses were found to be using computers mainly for carrying out administrative tasks, such as updating records, rather than as information tools to support evidence based practice, or patient information needs. Nurses discussed the systems they used, the equipment provided, and their skills, or more often their lack of skills. The need for support was a frequent comment, most nurses feeling that it was essential that help was available at the point of need, and that it was provided by someone, preferably a nurse, who understood the work context. Three groups of nurses were identified. Engagers; Worried Willing and Resisters. The report concludes that pre-registration education has a responsibility to seek to ensure that newly qualified nurses enter practice as engagers.

Nurses on the net.

Nurses need to be able to use the Internet effectively to support their own professional practice, and to help patients meet their information needs. A study was undertaken with new student nurses to investigate their access and use of the Internet, and their perceptions of their skills. The study found that whilst student nurses have access to computers and the Internet use is mainly limited to the World Wide Web and email. Skill levels tend to be poor when asked about anything other than the most basic tasks such as entering addresses in a web browser. Half of the students in this study could not efficiently locate information on the Internet, and only a third could check an email for viruses. Students also showed a lack of awareness of their own skill levels especially when compared to external standards such as the European Computer Driving Licence. Nurse education needs to make students aware of the skills and knowledge that they will need once qualified, and to give them sufficient opportunity to develop these.

Learning to use the Internet as a study tool: a review of available resources and exploration of students' priorities.

BACKGROUND: The Internet is a valuable information tool, but users often struggle to locate good quality information from within the vast amount of information available. OBJECTIVE: The aim of the study was to identify the online information resources available to assist students develop Internet searching skills, and to explore the students' priorities in online guides. METHODS: A qualitative approach was adopted with two phases. The first was a structured search of available online study skills resources. The second comprised 10 group interviews with a total of 60 students at all stages of five undergraduate health and social care related courses at a UK university. RESULTS: The study found that there were good online guides available, but that, perversely, the better guides tended to require the best searching skills to locate them. A few students were enthusiastic about using online support, however the majority felt that if they had the skills to locate such resources they wouldn't use a study guide to improve these skills, and if they did not have the skills they would not think of using an online guide to develop them. CONCLUSIONS: Students wanted assistance when they had problems or questions, rather than sites that offered structured learning experiences. Personal support rather than virtual support was also considered to be most important to the students in this study.

Surfing or drowning? Student nurses' Internet skills.

The ability to use the Internet is an essential skill for nursing students, both to support their studies, especially as nursing students spend a lot of their time in placements away from the university campus, and to support their development of skills in using what is becoming an increasingly essential tool for professionals. A study at Bournemouth University, England, found that new student nurses had poor Internet skills and were not frequent users prior to starting the course. No link was found between the students' ages and their Internet use or skills. A clear link was however found between ability and frequency of use, except in relationship to the students' ability to conduct an effective search. Almost half of the respondents said that they find far too much irrelevant information when searching for information on the Internet. Given the importance of Information and Technology skills to nurses, both as lifelong learners and as competent practitioners and to nursing students throughout their pre-registration education, the inclusion of a programme to ensure that they develop these skills during their pre-registration education is essential.