UN ESCENARIO POLITIZADO Y EMOCIONAL

Face-to-face interviews, group meetings and focus groups were the main data collection tools applied. Table 4.2 represents information regarding this matter. A series of group meetings and one-to-one meetings with a consultant neurophysiologist

Participant Data Collection

Staff Group meetings 2 1 hour Diabetes Care

Centre in JCUH ICT/System

Development Department

Group meeting 2 1 hour JCUH

Director of

Information Group meeting 1 1 hour JCUH

Epilepsy

ED staff Interviews 3 30 min

approx ED in JCUH Table 4.2: Information Regarding Participants

was conducted to elicit the needs of consultants from an electronic database, what they require to be stored in the database, how to navigate this, how to subgroup information, etc. that are necessary and essential for managing patient information.

The focus was on information that is considered critical and vital for the consultant to record and store in the database and what needs to be retrieved. What specific data that needed to be included and which ones need to be displayed under specific groupings and sub-tabs in order to make navigation and retrieval easy and fast.

The group meetings were held in the office of the consultant neurophysiologist in the Neurophysiology Department in JCUH and were no more than one hour long.

Those group meetings were as needed over the course of the project in a period of time from June 2013- Jan 2017.

As the Neurophysiology Department had no electronic forms for storing patients information, it was essential to request assistance from another department in the hospital, which had more experience with dealing with an electronic database in the hospital, and the Diabetes Care Centre did have such experience. The reason for this was that the Diabetes Care Centre was also previously working on a paper based filing system, and their electronic database was created by the individual effort of a physician. Consulting them was initiated, supported and guided by the consultant neurophysiologist. This paved the way to ongoing consultations with the administration staff who were responsible in managing the electronic database for people who have diabetes. Multiple group meetings with two staff from the Diabetes Care Centre administration were held in the hospital in the Diabetes Care Centre.

Those group meetings were essential to understand who hosted the database, how the database was created, how the database was constructed, and the management of patient information. It was also necessary to know what systems were available in the hospital, how they stored data, manipulated it, altered it, managed it, etc.

The ongoing meetings were spread over a period between 2014- 2017 and no meeting exceeded an hour in length.

A one hour group meeting with the JCUH Director of Information on 18/10/2013 and later on with the ICT/System Development Department on 15/12/2015 were essential prior to building the PWE database and the front-end interface. Likewise, gathering their feedback of the model in order to be consistent with the operational system at JCUH. Discussions included how to host the PWE database and tech-nical, operational, and organizational opportunities. Additionally, explaining the IB system and the role of the database for PWE that is to be built in the Neu-rophysiology Department. Unfortunately, after a change in South Tees Hospitals NHS Foundation Trust’s staff and priorities, the researcher was later informed that JCUH could not host the database.

Meetings, with an epilepsy specialist nurse, were also arranged in order to gather her requirements for the database and the front-end interface, as the information needed by a nurse in order to deliver healthcare for PWE is different from that

needed by a physician. What seems critical for a physician may not be as critical to a specialist nurse; so their requirements from the database differ according to their roles. For example, the epilepsy specialist nurse will be more focused on the patient’s care plan. The nurse will give instructions to the PWE on safety, indoor and outdoor life skills, and special training if the patient needs it. Information about other people to contact in the case of an emergency, setting appointments, and updating their contact is also needed. These information requirements and usage are different from those of a consultant neurophysiologist. An hour long face-to-face interview with a walk-though of the end-user interface was delivered to the participant in the Neurophysiology Department on 13/2/2017.

Three expert patients, who are heavy users of the JCUH Neurophysiology De-partment and the ambulance service, were face-to-face interviewed separately in the Neurophysiology Department for 30 minutes. Two expert PWE/carers were inter-viewed on 28/10/2014 and the other PWE/carer on 20/9/2013. The selection of the participants were made by the consultant neurophysiologist from the patient list in JCUH Neurophysiology Department. Their perspectives provided the focused in-depth knowledge of the concerns of PWE/carers who are heavy users of the am-bulance service and frequently transported to ED. They have also shared their views regarding their data and how it is transferred with other health organizations, they also discussed issues regarding the IB and the PWE database.

A number of PWE and/or carers participated in focus groups with the aid of Epilepsy Action, UK. All focus groups were organised by the North England Man-ager of the Epilepsy Action through which invitations were sent to all participants.

The first focus group was held at Middlesbrough on 20/4/2015. Six participants were there, excluding the organiser and the main researcher. The second focus group was held in Durham city on 13/5/2015. Five people attended this focus group, excluding the main researcher. On 13/6/2015, another focus group, organised by the Epilepsy Action in York, was introduced to the researcher to get participants reflections, in-sight and opinions towards the IB system. A storyboard walk-through was delivered to the audience, which consisted of approximately 70 participants, leading to

valu-able feedback and opinions. This helped to identify what participants wanted from the IB system, what outcomes they needed from the ambulance service, what they wanted from ambulance trusts, the crew, and whether they be happy to share their information with ambulance trusts, what concerns they have towards data trans-fer issues, etc., what they would like their physician, epilepsy specialist nurse, the hospital, etc. to know about their health.

Participants in focus groups were all PWE/carers but with less severe needs for the ambulance services. Their perspectives provided a more holistic view of what PWE/carers concerns were, what help was available for them, what information can be shared with the crew if an ambulance was dispatched, and if there is a need to be conveyed to ED even when not necessary. This group gave a better understanding of the wider population of PWE and how needs might vary across degrees of severity and different perspectives of people who have not yet had, or only had little involvement with the ambulance service, and if they had the same kind of views of those who use the service heavily.

ED staff were also interviewed. The interview was approximately 30 minutes long. One interview was held on 14/5/2015 and the two others were on 19/5/2015, which all took place in the ED at JCUH. Due to the busy nature of the ED and the time pressure staff are under, there were only three interviewees, and the duration of the interview did not exceed 30 minutes. The participants were asked about what they thought of the existing information transfer system (ePRF) that was provided to them by NEAS, their views about information transfer and patient data, and about the IB and its role.