Introduction
Methods
Development of taxonomy (interviews and focus groups) | Refinement of taxonomy (workshops) | |
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Design | - Previously both quantitative [22, 23] and qualitative [15, 19, 24, 25] approaches have been used to develop taxonomies. - Our study used qualitative methods (interviews, focus groups and workshops) and was conducted in a two-stage process (see Fig. 1). First, interviews and focus groups were conducted to develop an initial taxonomy. Workshops were then conducted to refine the proposed taxonomy. - Qualitative methods were used as they allowed for more in-depth understanding of coordination which is a multifaceted concept [24, 25]. Additionally, qualitative methods enabled us to involve stakeholders with the most experience of care coordination, which is particularly important in health care service research [26]. By understanding patients’, carers’ and health care professionals’ views on the organisation of coordination of care for rare conditions it may be possible to improve health care services, and optimise the patient experience. | |
Setting | - UK based study - Coordination across the NHS, social care and third sector (with a primary focus on health care) | |
Sample | Eligibility criteria To participate in our study, participants needed to be: - 18 or over (Children were not included due to ethical issues recruiting participants under 18) - Patients with rare, ultra-rare or undiagnosed conditions, carers/parents of children or adults with a rare, ultra-rare or undiagnosed condition, health care professionals, charity representatives or commissioners Recruitment methods Participants were recruited using a range of methods, including: - Email invitation - Adverts on social media - Voluntary sector study advertisement - Adverts through our partnership with four NHS sites Sampling criteria To ensure that different models of coordinated care and a wide range of experience and expertise were captured, we purposively sampled using the following characteristics - For health care professionals/commissioners/charity representatives—area of the UK, job role, experience with different types of care coordination - For patients/carers—area of UK, condition, role, age, experience with different types of care coordination | |
Measures | - To develop the taxonomy, we developed two topic guides: (1) interview topic guide and (2) focus group topic guide (Additional file 1: Appendix S1). - Questions focused on a range of topics including stakeholders’ experiences of coordinated care, implications of coordinated care, preferences for aspects of care coordination (ways of coordinating care, format, access, frequency, location, information sharing, transition), benefits and challenges and factors that help or hinder coordination. - Feedback on the topic guide was sought from the CONCORD public and patient involvement advisory group prior to data collection. | - We developed one topic guide for the workshops (Additional file 2: Appendix S2). - The topic guide was based around the six categories identified in the taxonomy and included prompts on whether we had missed anything, whether findings seemed appropriate based on participants’ experiences, appropriateness of options in light of the COVID-19 pandemic and recommendations to improve each of the six categories. |
Procedure—recruitment and ethics | - Potential participants contacted the researcher (HW) via email or telephone and were given participant information sheets. - Potential participants were asked to provide responses to eligibility questions when registering their interest. - For professionals, these included: their occupation, speciality and geographical region. - For patients or carers, these included whether they receive coordinated care (specialist service and who coordinates), whether they have a diagnosis, are a patient/carer, their age range, ethnicity and geographical region. - Selected individuals were asked to complete two written consent forms prior to taking part in the interviews, focus groups or workshops. Participants who took part virtually or via telephone were asked to return written consent forms in advance. - Participants were informed that their data would be kept confidential, fully anonymised and that they could withdraw at any time without reason. Focus group participants were informed that any data collected up until the point of withdrawal would be kept due to difficulties removing individual participants from focus group data. We took steps to ensure that quotes from the participant who withdrew from the study were not included in publications. | |
Procedure—data collection | - One researcher (HW) conducted the interviews. - Interviews took place by phone (n = 27) or face-to-face (n = 3), depending on participants’ preferences. - The interviews lasted approximately one hour (range 44–74 min). - Two researchers (HW and AS) conducted the four focus groups (one researcher facilitated, and one researcher took notes) [27]. A third researcher observed one of the focus groups (EH). Two focus groups were face-to-face in two cities in the UK, and two were conducted using Skype for Business. Focus groups were up to three hours in length (including a break) (range 149–154 min). - Interviews and focus groups were digitally recorded using an encrypted dictaphone (with consent from participants) and professionally transcribed. - Transcripts were checked for accuracy and fully anonymised (including names, places and due to their rareness—the names of specific conditions). - Data were stored in the university’s secure data environment and coded using NVivo 12 [28]. | - Workshop participants were sent a 15-min video prior to the workshop which outlined the findings of the taxonomy. - Participants were split into three breakout groups. - Each breakout group had one facilitator (HW, EH, AIGR) and one note taker (JJ, SM, AH). - After the breakout groups, participants reconvened in the main group and received feedback from each group on their discussions. - Workshops were recorded using an encrypted Dictaphone. - Notes were checked for thoroughness and summarised prior to being sent to a graphic facilitator (New Possibilities) to create a graphical representation of the findings (Additional file 3). |
Analysis | - Thematic analysis was used to analyse interview and focus group data. In line with recommendations for taxonomy development [15]. - Inductive coding was used to develop an initial coding frame [29]. Six interview transcripts were coded inductively by two researchers (HW/AS). A coding framework was developed and agreed. The framework included codes on aspects of care coordination
(types, who is involved, mode, information sharing, where, frequency, transition between services, methods of access) and qualifier codes (preferences, benefits and challenges, barriers and facilitators, factors influencing coordination). - The framework was used to code all interview and focus group transcripts (HW). A second researcher (AS) coded six interviews and one focus group transcript (20% of the data). Coding was discussed and any discrepancies (e.g. on how codes were used/what codes meant/when to use codes) were agreed. - Findings were then grouped into themes and sub-themes using thematic analysis [30]. Given the large amount of data, this was done in two stages: (1) development of themes and sub-themes for the data on aspects of coordination (to develop initial taxonomy options), (2) development of themes and sub-themes for the data on qualifying codes (to develop models) (described in [20]). - Five themes were developed (ways of organising care, ways of organising teams, responsibilities for coordination, access to coordination and mode of coordination). - Themes and sub-themes were discussed by co-authors and used to develop a taxonomy. - Once themes and sub-themes had been developed six stages of taxonomy development [31] were followed: (1) Identify the meta-characteristic that will inform the choice of characteristics in the taxonomy (2) Identify ending conditions (requirements that the taxonomy needs to meet to be finalised) (3) Choose approach We used an empirical-conceptual approach. We based the taxonomy on our findings from interviews and focus groups and earlier CONCORD findings (4) Identify a subset of objects to classify, using findings from the interviews and focus groups (5) Identify common characteristics (similarities and differences will be identified to identify common characteristics and discriminatory characteristics for coordinated care) (6) Group the characteristics using a manual process [14] - We reviewed our findings in relation to the CONCORD scoping review [13] and preliminary survey findings [21] to ensure that there were no major options missing from our taxonomy. - Additionally, the wider CONCORD team and CONCORD public patient involvement advisory group reviewed the taxonomy findings and provided feedback on the taxonomy prior to the workshop. | - Workshop notes were coded and grouped into themes surrounding their experiences of the model of coordination, benefits and challenges of the model of coordination, factors influencing coordination, missing aspects and impact of COVID-19. - Feedback on aspects that were missing in the taxonomy were used to refine and finalise the taxonomy. - Findings highlighted key aspects to be clarified within the taxonomy, including: the need to emphasise that care is not just medical (also includes social and educational aspects), and that care is lifelong. - Findings also highlighted the need to separate out collaborations that include patients/carers from collaborations between professionals. The need for third sector involvement in collaboration where appropriate; the need to emphasise the role that charities and patients/carers play in care coordination; a hybrid model of frequency and the need to clarify aspects of the mode domain. - The taxonomy was amended in line with this feedback. |
Design
Setting
Sample
Procedure
Analysis
Step | Our process |
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1. Identify meta-characteristic | Meta characteristic = different ways in which care can be coordinated for rare conditions |
2. Identify ending conditions | Our ending conditions: 1. Not merging or splitting any objects in the last iteration 2. Having at least one object (type of coordinated care) under every characteristic of every dimension 3. Not adding any new dimensions or characteristics in last iteration 4. Uniqueness of dimensions, characteristics and cells |
3. Decide on approach | We used an empirical-conceptual approach. We based the taxonomy on our findings from interviews and focus groups and earlier CONCORD findings |
4. Use a subset of objects to classify | We used themes and sub-themes from the interviews and focus groups as objects to classify. The sub-themes outline types of coordination that can be used as objects (e.g., nationally commissioned services and condition-specific clinics). List of ‘objects’ (example ways of coordinating care) were identified from themes and sub-themes |
5. Identify common characteristic | Similarities and differences were identified to identify common characteristics and discriminatory characteristics. These were identified through the summaries of themes and sub-themes |
6. Group characteristics using a manual or graphical process | We used a manual process to group characteristics into domains to form the first draft of the taxonomy |
Results
Participant characteristics
Development of taxonomy (n = 52) | Refinement of taxonomy (n = 27) | Total | |||
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Interviews | Focus groups | Patient and carer workshop | Professional workshop | ||
Number of participants | 30 | 22a | 12 | 15 | 79 (77 different peopleb) |
Type of participant | |||||
Patients | N/A | 16 | 5 | N/A | 21 |
Parents/carers of children aged < 18 years | N/A | 5 | 4 | N/A | 9 |
Parents/carers (e.g. spouses) of adults aged ≥ 18 years | N/A | 1 | 3 | N/A | 4 |
Health care professionalsc,h | 15 | N/A | N/A | 2 | 17 |
Health care professionals employed by charity | 2 | N/A | N/A | 2 | 4 |
Charity representativesd,h | 5 | N/A | N/A | 8 | 13 |
Commissioners | 3 | N/A | N/A | 3 | 6 |
Multiple professional rolese | 5 | N/A | N/A | N/A | 5 |
Age (years) | |||||
18–25 | N/A | 2 | 0 | N/A | 2 |
26–59 | N/A | 16 | 10 | N/A | 26 |
≥ 60 | N/A | 4 | 2 | N/A | 6 |
Diagnosisi | |||||
Rare/ultra-rare condition(s) | N/A | 22 | 12 | N/A | 34 |
Attend specialised servicef | |||||
Yes | N/A | 14 | 6 | N/A | 20 |
No | N/A | 7 | 4 | N/A | 11 |
Not sure | N/A | 1 | 2 | N/A | 3 |
Locations represented | |||||
National role (UK) | 2 | 0 | 0 | 8 | 10 |
National role (England and Wales) | 1 | 0 | 0 | 1 | 2 |
National role (England) | 5 | 0 | 0 | 3 | 8 |
Scotland | 1 | 0 | 1 | 0 | 2 |
Wales | 1 | 1 | 0 | 0 | 2 |
East of England | 1 | 2 | 1 | 1 g | 5 |
London | 4 | 7 | 0 | 0 | 11 |
Yorkshire and the Humber | 1 | 2 | 0 | 0 | 3 |
North East of England | 1 | 2 | 0 | 0 | 3 |
North of England | 1 | 0 | 0 | 0 | 1 |
North West of England | 2 | 3 | 1 | 0 | 6 |
South East of England | 1 | 2 | 3 | 0 | 6 |
South West of England | 4 | 0 | 4 | 1 | 9 |
West Midlands | 5 | 2 | 1 | 1 | 9 |
East Midlands | 0 | 1 | 1 | 1 g | 3 |
Ethnicity | |||||
White | N/A | 19 | 12 | N/A | 31 |
Other | N/A | 2 | 0 | N/A | 2 |
Not specified | N/A | 1 | 0 | N/A | 1 |
Who coordinates care? | |||||
Patient/carer | N/A | 17 | 10 | N/A | 27 |
GP | N/A | 1 | 0 | N/A | 1 |
Member of health care team | N/A | 1 | 0 | N/A | 1 |
GP and patient/carer | N/A | 2 | 1 | N/A | 3 |
Other | N/A | 1 | 0 | N/A | 1 |
Don’t know | N/A | 0 | 1 | N/A | 1 |
Taxonomy of care coordination for rare conditions
Domain | Sub-domain | Options | Examples |
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1. Ways of organising care | Local | Local care delivery | All care delivered locally—in one place, or multiple places—including hospital and home visits, emergency care |
Local care coordination | All coordination delivered locally—e.g. coordination appointments local to the patient | ||
Hybrid (combination of specialist and local) (e.g. hub and spoke models) | Coordination nationally centralised but delivered locally | Specialist service coordinating care but care delivery is done locally (e.g. at local hospital or GP) | |
Care nationally centralised but delivered locally | Care nationally centralised with outreach, specialist providers with routine care from local providers | ||
Types of outreach models | Outreach support for professionals, outreach clinics, outreach care coordination, outreach education | ||
Regionally centralised care | Regional network models, regionally delivered services | ||
Nationally centralised | Care delivered and coordinated centrally | Specialist centre, rare disease centre or service | |
Care delivered centrally (in one nationally commissioned service or centre) | Nationally commissioned service or rare disease centres, adult and paediatric centres or condition specific centres | ||
Care delivered centrally in multiple services/centres or as part of a network | National network models to deliver care and coordination and share expertise, nationally commissioned services | ||
2. Ways of organising those involved in a patient’s care (including professionals, patient and/or carer) | Lack of collaborative working between professionals involved in a patient’s care | Professionals not working together (health care, social care, third sector if appropriate, etc.) | Lack of multidisciplinary team (MDT) working, lack of collaborative working |
Collaboration between some of the professionals involved in a patient’s care | Some professionals working together to provide care (health care, social care, third sector if appropriate, etc.) | Joint clinics with specialist and local providers or adult and paediatric providers | |
Continuity of professionals | Same professionals throughout care, professionals attending appointments with patients | ||
Collaboration between many or all professionals involved in a patient’s care | All professionals working together to provide care (health care, social care, third sector if appropriate, etc.) | Condition specific clinics—run by health care professionals, within specialist service, one stop shop, carousel clinic | |
All professionals meeting together to discuss care (health care, social care, etc.) | MDT meeting, or health care professionals attending Education, Health and Care Plan meetings | ||
Lack of collaborative working between professionals and patients/carers | Professionals not working with patients | Lack of collaboration with patients (e.g. lack of involvement in MDT meetings) | |
Collaboration between some professionals and patients/carers | Professionals working with patients to prepare them | Orientation visits/transition events/advice and support | |
Patients meeting to discuss care | |||
Collaboration between many or all professionals involved in a patient’s care and the patient/carer | Professionals meeting together with patient/carer (health care, social care, third sector if appropriate etc.) | Patient involvement in MDT meeting where appropriate | |
3. Responsibilities | Administrative support | Administrator | A combination of an administrator and the patient and carer (e.g. working together to arrange appointments) An administrator/service PA or secretary (e.g. to produce letters and plans, take calls, organise clinics, act as the first point of contact for patients and update GPs), Rare disease charities (e.g. to provide administrative support, support with travel arrangements and answering queries) Automated support (e.g. a hospital appointment system) |
Point of contact for patients | Clinicians (e.g., consultants, nurses, community matrons, coordinators, geneticists, medical social workers, or disability nurses) Administrators (e.g. secretaries) Charity workers (e.g. charity patient support workers) and youth workers | ||
Point of contact for professionals (health care, social care,
etc.) | Coordinator, specialist | ||
Formal roles/responsibilities | Administrative coordinator | Clinic coordinator—could be range of roles, including patient/carer, non-medical professional, charity employed support worker, nurse or allied health professional equivalent | |
Care coordinator | Someone with system and condition knowledge such as a nurse or allied health professional equivalent or hospice/community nurse / social care professional / non-medical professional / charity employed support worker / transition coordinator / doctor equivalent role | ||
Clinical coordinator | Someone with sufficient clinical expertise to coordinate complexity—doctor equivalent role, GP | ||
Clinical lead | Someone with oversight over care such as a nurse, doctor equivalent role, GP | ||
GP | Coordination, and implementing care plans from specialist | ||
Charities / patient support networks (in some situations) | Direct roles in coordination (e.g., clinic coordinators/coordinating care), supporting coordination and advocating on patients’ behalf | ||
Supportive roles | Charities / patient support networks | Direct roles in coordination (e.g., clinic coordinators/coordinating care), supporting coordination and advocating on patients’ behalf | |
Patients and carers | Direct role as coordinators, providing education to professionals, part of the MDT and information provision | ||
Peers | Providing support for coordination | ||
No responsibility | No point of contact / coordinator / clinical lead / GP / no hospital ownership | ||
4. How often care appointments and coordination appointments take place | Regular | Care appointments | Ranging from multiple times per week—weekly—every 3 months—every 6 months—annually |
Coordination appointments | Ranging from more than once a month—monthly—every 2 months—every 6 months—annually | ||
Meetings | Ranging from before every clinic—weekly—twice a month—monthly—every 3 or 4 months –every 6 months- annually | ||
On demand—when needed | Care appointments | On demand care appointments, coordination or specialist centre appointments when needed | |
Hybrid (combination of regular and on demand) | Regular appointments (as above) with on demand in between as and when needed | Regular appointments but with on demand appointments (care appointments, coordination appointments or specialist centre appointments) as and when needed | |
5. Access to records | Full access | Health care professionals | Health care professionals having full access to records |
Patients and/or carers | Patients and/or carers having full access to records | ||
Filtered access (information filtered to necessary information that is needed by the relevant individuals) | Health care professionals | Health care professionals having access to the relevant necessary information that is needed | |
Patients | Patients and/or carers having access to the relevant necessary information that is needed | ||
Third sector (where deemed necessary) | Charity organisations having access to relevant necessary information if needed (e.g., when involved in care delivery/coordination) | ||
6. Modea of contact | Digital | Information sharing | Digital records, digital letters, digital databases and registries, digital portals, mobile applications for patients and digital patient information |
Coordinated care delivery | Video appointments with professionals, virtual MDT clinics, digital ways of tracking symptoms e.g., electronic wearable devices, virtual tours of wards, apps to record test results, diagnostic technology, virtual centres | ||
Coordination | Video appointments with coordinator, coordination in the cloud, virtual review (as lowest level of coordination) | ||
Communication (between professionals) | Virtual panels to discuss cases with experts, email hotlines, virtual MDT meetings and clinics, email contact | ||
Communication (between professionals, patients and carers) | Email contact | ||
Face-to-face | Coordinated care delivery | Initial meetings, key treatment phases such as diagnosis and stabilisation, physical exams, clinic appointments, home appointments | |
Coordination | Face-to-face meetings between
patients and coordinator | ||
Communication (between professionals) | Face-to-face team meetings | ||
Information sharing | Via coordinator and meetings | ||
Telephone | Coordinated care delivery | Telephone clinics and consultations, conference calls, appointments such as GP appointments, telephone calls when needed, discharge calls and follow-up appointments | |
Coordination | Telephone calls with coordinators, initial introductions, coordination of care via phone, NHS 111 style phone service to coordinate care for rare conditions, WhatsApp contact with coordinator | ||
Communication (between professionals) | Phone calls with other professionals, contacting specialists, professional conference calls, discussing treatment plans, asking local teams to implement care plans | ||
Communication (between professionals and patients/carers) | Telephone advice services or direct line to team, regular check-ups, phoning departments, WhatsApp contact, phone calls between patient and professionals, messaging peers | ||
Written | Information sharing—care documentation | Written records such as condition specific passports and alert cards Written letters such as clinic letters, discharge letters and summary letters Care plans for patients such as agreed care plans, shared care protocols, Education Health Care Plans, transition plans Reports such as written reports and handover packs and transition reports and booklets and Summary of records | |
Information sharing—service planning | Plans to specify hospital and health care professional roles and responsibilities Standard operating procedures to record MDT working | ||
Information sharing—guidelines and care pathways | Service specifications Quality assurance standards Governance frameworks National guidelines such as NICE, charity produced, or specialist service produced International best practice Lack of evidence-based pathways For coordinators | ||
Information sharing—training policies and frameworks | For coordinators, supervisors | ||
Lack of (communication mode) | Information sharing | Lack of letters, care plans | |
Communication | Between professionals or professionals and patients |
Domain | Sub-domain | Example quote |
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Ways of organising care | National | “Yeah, we’ve been running our multi-specialty clinics for about 18 months now in our new Rare Disease Centre” (interviewee, health care professional) |
Hybrid | “So, [Place 3] is our lead paediatric centre, so they see all the local [Place 3] patients, and they are our hub, we are a spoke, so we look after the patients locally in [Place 2]. But [Place 3] very much do like the guidelines that we follow and everything like that, and they are available to contact […] and like I said once a year they will see every patient in our clinic” (interviewee, charity representative and health care professional) | |
Local | “I live in deepest darkest, it’s rural [Region 1], nearly as far away from the central hospitals of [Place 3] and [Place 2] as you can get. So I want all my care in the community and that of my son, I want everything down here, because you know, there’s no public transport, there’s no, I mean, literally there are no buses where we live, anywhere. To get anywhere, yeah, there’s just nothing. And so we need something that is definitely in the community, and also communities can be very different” (interviewee, patient group representative) | |
Ways of organising those involved in a patient’s care (including professionals and patient and/or carer) | Collaboration between many or all of those involved | “The [rare condition x] clinic does try to address some of those deficiencies by providing a platform for coordinated care. […] they can come to the clinic here and see six different specialties simultaneously, and those different specialties can then try and formulate a care plan which incorporates aspects of each specialty’s contribution” (interviewee, health care professional) |
Collaboration between some of those involved | “But what we try to do is to ensure that there is a joint transition clinic between the paediatrician and the receiving adult clinician and a visit to the hospital, which is usually supported […] by one of the workers from the children’s unit” (interviewee, commissioner) | |
Lack of collaborative working | “My experience currently of coordinated care is that there is none. It sounds like a complete and utter fantasy to me” (focus group participant, parent/carer) | |
Responsibilities | Administrative support | “We’ve got an admin person and she’s quite instrumental at helping us set those up as well […] so that’s a useful, really useful resource that we have “ (interviewee, health care professional) |
“Yeah, we have a—when a patient is new to the service they’ll get given quite a lot of contacts, including our health email” (interviewee, health care professional) | ||
Formal responsibilities | “there could be a stratified level of lead with a, sort of, triangle, an upturned triangle with a base at the bottom, the pinnacle at the top, and then, actually, the other way around, that the digital is at the bottom along with the smallest amount of care, and then, you know, you might have a patient requiring, you know, a quarterly or even a monthly telephone call with the coordinator or the community nurse, or whatever. […] Certainly, you start with digital and then you would have a monthly phone call or a quarterly phone call depending on what the anticipated need of that patient is, and then it could be escalated up as required” (interviewee, commissioner) | |
“I guess it’s fairly, sort of, just everyone, sort of, chipping in, but I guess, obviously, the consultant’s there and, ultimately, they will try and… You know, if we’re struggling with it, then they might, sort of, take more control of that conversation and be, like- or suggest, “Why don’t you do it like this?” but, generally, it’s, kind of, us just, sort of, negotiating between ourselves” (interviewee, health care professional) | ||
“I think that a GP is the closest thing I have to a care coordinator […] feel like they might be best equipped to sort of coordinate care if they had more time and training to do it or even budget to do it” (focus group participant, patient) | ||
Supportive roles | “but they [patient support groups] are very good at picking up the pieces, supporting patients and providing information that the health care professionals don’t provide, so they’re key I think” (interviewee, health care professional) | |
“I’m pretty much [Name 1]’s care co-ordinator. She sees about 15 to 16 different specialists” (focus group participant, parent/carer) | ||
How often care appointments and coordination take place | Regular | “so there could be kind of like different levels of how often you need to see people, but I think definitely for us it would be that it would be ongoing at the minute” (focus group participant, parent/carer) |
On demand | “I find sometimes if you have yearly or six-monthly appointments time and time again, they can be a bit fruitless” (focus group participant, patient) | |
Access to records | Full access | “Well, that gets us back to the electronic patient record, doesn’t it? you know, ideally, I think there should be an electronic patient record that is accessible to everyone involved in someone’s care. Unless that is available, communication always ends up as a weak link, doesn’t it?” (interviewee, health care professional) “I just want it to be shared with me, and it can’t, and they never let you see everything” (focus group participant, patient) |
Restricted access | “Yeah, so in essence, the way…what I’ve just really said, I think the information needs to be available to all who need to have it, obviously with appropriate restrictions” (interviewee, health care professional) “I would like something like that on my health records of who wants to look at it, with a little bit of why, then yes, I’ll just tick yes, but also, I’d like a list of who has accessed it. […] Because I want to know who’s reading my, you know, someone did say at one time, “Oh, the psychiatric team are looking at your notes,” I haven’t given them permission to do that. […] You know, why are they looking at my notes and for what reason?” (focus group participant, patient) | |
Mode of contact | Information sharing | “Well it is having it, so basically so there is communication from one place to the
next. […] if everything’s joined up beautifully electronically, that’ll be there anyway almost” (interviewee, health care professional) |
“it’s really helpful that there’s a sort of overarching operating policy or operating manual for any service” (interviewee, commissioner) | ||
Care and coordination appointments | “there needs at least to be a connection with a multidisciplinary physical structure […]. And otherwise the coordination of care could also be digital, as we said beforehand. You know, it could be on the cloud” (interviewee, health care professional) | |
“a new diagnostic result. I think this requires face-to-face contact with, you know, an expert or a coordinating clinician. This is, you know, it’s like giving someone a new name. So, I think it is very important that there’s a face-to-face contact with a medical professional when this happens. Then I think there is a need for face-to-face contact when there’s a new kind of clinical or medical complication, but that face-to-face contact need not necessarily be with the coordinating clinician; that could be with the relevant clinician” (interviewee, health care professional) |