Patients' experiences when accessing their on-line electronic patient records in primary care.

BACKGROUND: Patient access to on-line primary care electronic patient records is being developed nationally. Knowledge of what happens when patients access their electronic records is poor. AIM: To enable 100 patients to access their electronic records for the first time to elicit patients' views and to understand their requirements. DESIGN OF STUDY: In-depth interviews using semi-structured questionnaires as patients accessed their electronic records, plus a series of focus groups. SETTING: Secure facilities for patients to view their primary care records privately. METHOD: One hundred patients from a randomised group viewed their on-line electronic records for the first time. The questionnaire and focus groups addressed patients' views on the following topics: ease of use; confidentiality and security; consent to access; accuracy; printing records; expectations regarding content; exploitation of electronic records; receiving new information and bad news. RESULTS: Most patients found the computer technology used acceptable. The majority found viewing their record useful and understood most of the content, although medical terms and abbreviations required explanation. Patients were concerned about security and confidentiality, including potential exploitation of records. They wanted the facility to give informed consent regarding access and use of data. Many found errors, although most were not medically significant. Many expected more detail and more information. Patients wanted to add personal information. CONCLUSION: Patients have strong views on what they find acceptable regarding access to electronic records. Working in partnership with patients to develop systems is essential to their success. Further work is required to address legal and ethical issues of electronic records and to evaluate their impact on patients, health professionals and service provision.

Patients' access to their online electronic health records.

We surveyed a randomized group of 1050 adult patients stratified for age and sex, from a general practice in Oxfordshire, to find out their attitudes to electronic health records (EHRs). Eighty-six per cent thought that patients should have the right to see their records. While 72% knew that they had the right to see their records, only 4% had done so. Private EHR viewing booths with a computer and fingerprint identification system were installed in the primary care centre. Patients were randomly selected from those who responded to the questionnaire and wished to view their EHR. Of the 100 patients who saw their online EHR, 99 found the session useful and 84 found their records easy to understand. Three focus groups were held with 14 patients who said that they did not want to access their EHRs. The reasons patients gave during the focus groups included that they trusted their general practitioner and thought it would imply a lack of confidence. After the focus groups, 11 patients changed their minds and accessed their records. We believe that patient-accessed EHRs will offer substantial benefits to patients, health professionals and the National Health Service as a whole.

Mapping children's palliative care around the world: an online survey of children's palliative care services and professionals' educational needs.

AIMS: To map children's palliative care (CPC) around the world and to and survey the learning needs of respondents. METHODS: The study reports on the responses to an online questionnaire given by people downloading the online version of the 'Children's Palliative Care in Africa' textbook. RESULTS: 346 people responded (251 health professionals) from all continents but mostly from Africa, N America or Europe. Respondents worked in various types of health facilities, but in Africa over half were HIV/AIDS treatment centres. The average number of children per year seen ranged from 136 in Africa to 82 in Europe. The overall mean confidence scores across all CPC subject areas was 3.2/5. Confidence increased significantly with the degree respondents were exposed to caring for dying children in practice. Nurses were marginally the most confident group, but less confident than doctors in pain and symptom-control. N Americans were more confident than others in all subject areas except HIV/AIDS and spirituality, where Africans were more confident. Europeans were more confident than Africans in symptom control subject areas. Africans see the most children, but have the least confidence, and fewest resources. DISCUSSION: This is a descriptive uncontrolled study so any apparent differences between respondent sub-groups require further validation. The study provides insight into who is providing CPC across the world, and highlights the multi-disciplinary nature of CPC. It raises questions about how we can best support colleagues in resource-limited settings. It suggests further study is required into the nature of regional demand for CPC, the best places to resource and provide CPC, the nature of professionals' training needs, the most effective ways to train and deliver CPC care, the best ways for professionals to support each other, and effective ways to share resources and knowledge across the world.

A study into the children's palliative care educational needs of health professionals in Uganda.

STUDY AIM: To research the children's palliative care (CPC) educational needs of health professionals in Uganda. METHODOLOGY DESIGN AND SETTING: Mixed quantitative and qualitative survey set in three hospice sites in Uganda. INTERVENTIONS: Self-rating survey, log book of problem cases, focus group of students of a CPC course. MAIN OUTCOME MEASURES: Self-rated "usefulness of further training" scores for CPC subject areas; thematic analysis of log books; thematic analysis of focus group findings. RESPONDENTS: All health professionals (n = 50) were invited and 48 (96%) consented to participate. ETHICAL CONSIDERATIONS: The study was approved by the Hospice Africa Uganda (HAU) Research and Ethics Committee. RESULTS: Communication with children rated highest in all three arms of the study. SELF-RATING SURVEY: Average score = 8.3 of 10; range = 6.4 of 10 to 9.5 of 10. Communication with children, pain management, and psychological issues rated highest, and technical subject areas predominated. LOG BOOK ANALYSIS: Strongest themes were communicating with children and families, team-working, and managing personal stress. FOCUS GROUP ANALYSIS: Strongest themes were communicating with children, assessment and management planning, and managing personal stress. DISCUSSION AND CONCLUSION: There is educational need for all CPC subject areas across the board, but communication with children is the most pressing. There are disparities between recognized learning needs (technical skills predominating) and unrecognized learning needs (interpersonal and intrapersonals skills predominating). While the broad subject areas for CPC may be similar in resource-rich and resource-poor settings, educational resources developed for the specific context of African and other resource poor settings are required.

The beginnings of children's palliative care in Africa: evaluation of a children's palliative care service in Africa.

AIM: To evaluate a children's palliative care service designed specifically for a resource-poor sub-Saharan African setting. METHODOLOGY: The study used mixed quantitative and qualitative methodology: quantitative retrospective, comparative survey and cross-sectional, noninterventional interview survey. RESULTS: Evaluation showed increases in referrals, proportion of children on program, morphine and chemotherapy prescriptions, and improved compliance for a cost of $100 per child. The most valued service strengths were free drugs, food, play, learning, and staff attitude. Weaknesses included insufficiency of strengths listed above, as well as poor hospital staff attitude, lack of school fees and poor treatment compliance rates. Suggestions included more of the strengths as well as more accessible service locations. DISCUSSION: The study suggests affordable, nurse-led, volunteer-supported children's palliative care services are both achievable and effective in sub-Saharan African. The study suggests that palliative care units should provide a specialized service focused on children. Such a service would clearly identify children in need of children's palliative care and should provide medication for symptom control; food and basic needs support; play and learning facilities; child protection; and systems for patient education, communication and follow up. Staff lack confidence and/or competence and this is a significant barrier to children's palliative care that should be addressed in Africa.

A study into the educational needs of children's hospice doctors: a descriptive quantitative and qualitative survey.

OBJECTIVES: To identify and explore the educational needs of children's hospice doctors in England. DESIGN: A descriptive quantitative and qualitative survey. SETTING: Children's hospices in England. PARTICIPANTS: All children's hospice doctors (n =55) in England were approached, and 35 (65%) consented. INTERVENTIONS: A questionnaire designed to survey doctors' self-assessed educational competencies (confidence and perceived need for training) in subject areas derived from analysis of existing children's palliative care literature. Educational diaries used prospectively in practice to identify areas of unmet educational need. MAIN OUTCOME MEASURES: Self-perceived confidence and usefulness scores for each subject area. An analysis of support, education and training needs deriving from educational diaries and one-to-one interviews. RESULTS: Confidence and usefulness scores suggest that respondents would most value support, education and training in the management of emergencies, symptoms and physical disease. Educational diary analysis revealed that respondents would most value support, education and training in communication skills, team-working skills, and personal coping strategies. CONCLUSIONS: There is a disparity between educational needs as derived from self-rated competencies and from educational diary keeping; suggesting that children's hospice doctors may not be fully aware of their own educational, support and training needs. Self-rated competencies emphasise the value of education in craft or clinical skills; whereas personal diary keeping emphasises the value of education in intrapersonal and interpersonal skills such as communication, team-working and personal coping skills. The current curricula and educational resources need to acknowledge that interpersonal and intrapersonal competencies are as important as clinical competencies. While the study looks particularly at the educational needs of children's hospice doctors, readers may feel that the findings are of relevance to all specialities and disciplines.

Access to electronic health records in primary care-a survey of patients' views.

BACKGROUND: The NHS is moving towards electronic access to health records for patients from 2004 and needs to involve patients in the development process. The aim of the study was to explore the views of a large sample of patients about online access to EPRs and health information in primary care. Areas covered included: accuracy rights of access; security; confidentiality and smart cards. MATERIAL/METHODS: The questionnaire was sent to 1050 patients selected at random from the practice list after stratification for age and sex. RESULTS: 66% of patients aged over 20 years old responded. Patients know they have the right to see their records although few have done so. Overall they feel the advantages of electronic health records outweigh the disadvantages. They have concerns about security, confidentiality, understanding their records, their accuracy and completeness. The patients recognised the potential benefits to their healthcare and relationships with health professionals. There was a majority view that parents / guardians and carers should have access to their dependants' records. CONCLUSIONS: Patients need to be confident that access is limited to those who have the right to see the records. The majority were confident they would understand their records and about half were familiar with computer use. However these are major issues for older patients who will require assistance in order to benefit from accessing their EPRs. It is essential that patient involvement takes place at every stage of the development of EPRs and that their views are taken into account.