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Cover of Evidence review: Information sharing

Evidence review: Information sharing

End of life care for adults: service delivery

Evidence review I

NICE Guideline, No. 142

.

London: National Institute for Health and Care Excellence (NICE); .
ISBN-13: 978-1-4731-3560-4

1. Information sharing

1.1. Review question: What are the best ways to share information within multiprofessional teams, between multiprofessional teams and between multiprofessional teams and services to ensure continuity of care for people who are in their last year of life?

1.2. Introduction

People in the last year of life are likely to be involved in meeting and dealing with a wide range of health and social care professionals in order to meet their needs. This will result in data being held at various organisations and different sectors, thus causing burden for patients and their carers. Errors in duplication of information can occur, but more importantly the lack of access to relevant information such as advance care plans, can cause distress and harm.

Data protection governance is a necessity but it should not be a barrier to sharing data across different organisations. The access to the right information at the right time by the right person can make it much easier to provide high quality care to the patient including following their previously expressed wishes where appropriate. It can also make the experience more positive for their carers and people important to them.

The sharing of information has to be across health, social care and third sector organisations and this presents a major challenge. The development and use of electronic co-ordination systems (such as EPaCCS (Electronic Palliative Care Coordination Systems)) which use a minimum data set to be shared electronically across all organisations caring for the patient is a move towards doing this.

1.3. PICO table

For full details see the review protocol in Appendix A.

Table 1. PICO characteristics of review question.

Table 1

PICO characteristics of review question.

1.4. Clinical evidence

Included studies

A search was conducted for randomised trials and non-randomised comparative studies on the effectiveness of models of information sharing within multiprofessional teams, between multiprofessional teams and between multiprofessional teams and services to ensure continuity of care for people in their last year of life.

Two studies were included in the review; 19 52 these are summarised in Table 2 below. These studies both compared models of information sharing between multiprofessional teams and services. No evidence was found on models of information sharing within multiprofessional teams or between multiprofessional teams.

Evidence from these studies is summarised in the clinical evidence summary below (Table 3). See also the study selection flow chart in Appendix B, forest plots in Appendix D, study evidence tables in Appendix E, GRADE tables in Appendix G and excluded studies list in Appendix H.

Excluded studies

See the excluded studies list in Appendix I.

Summary of clinical studies included in the evidence review

Table 2. Summary of studies included in the evidence review.

Table 2

Summary of studies included in the evidence review.

Quality assessment of clinical studies included in the evidence review

Table 3. Clinical evidence summary: Model of information sharing between multiprofessional teams and services (Patient-held information – the Newcastle record) versus usual care.

Table 3

Clinical evidence summary: Model of information sharing between multiprofessional teams and services (Patient-held information – the Newcastle record) versus usual care.

Table 4. Clinical evidence summary: Model of information sharing between multiprofessional teams and services (Patient-held information – the Patient care travelling record) versus usual care.

Table 4

Clinical evidence summary: Model of information sharing between multiprofessional teams and services (Patient-held information – the Patient care travelling record) versus usual care.

See Appendix F for full GRADE tables.

1.5. Economic evidence

Included studies

No relevant health economic studies were identified.

Excluded studies

No health economic studies that were relevant to this question were excluded due to assessment of limited applicability or methodological limitations.

See also the health economic study selection flow chart in Appendix G.

1.6. Resource costs

Recommendations made based on this review (see section Error! Reference source not found.) are not expected to have a substantial impact on resources.

1.7. Evidence statements

Clinical evidence statements

Model of information sharing between multiprofessional teams and services (Patient-held information – the Newcastle record) versus usual care

One study compared a model of information sharing between multiprofessional teams and services (patient-held information, the Newcastle record) versus usual care. The evidence showed no clinically important difference in patients’ satisfaction with communication between GP and hospital doctors (about illness, problems and treatment), with information exchange between hospital staff (about illness, problems and treatment) and with information from out-patient doctors (range from n=137-164; low to very low quality). There was evidence of clinically important benefit of information sharing for patients’ satisfaction with information from their GP (n=173; very low quality).

Model of information sharing between multiprofessional teams and services (Patient-held information – the Patient care travelling record) versus usual care

One study compared a model of information sharing between multiprofessional teams and services (patient-held information, the Patient care travelling record) versus usual care. There was no evidence of clinically important difference in patients’ satisfaction between the two groups (n=21; very low quality).

Health economic evidence statements
  • No relevant economic evaluations were identified.

1.8. The committee’s discussion of the evidence

Interpreting the evidence

The outcomes that matter most

The committee identified quality of life, and preferred place of care and death as the critical outcomes for identifying people in their last year of life. The following outcomes were identified as important: length of survival, length of stay, length of survival hospitalisation, number of hospital visits, number of visits to accident and emergency, number of unscheduled admissions, use of community services, avoidable or inappropriate admissions to ICU, inappropriate attempts at cardiopulmonary resuscitation, staff satisfaction, patient or carer reported outcomes and carer health.

See tables 7 and 8 in the Methods chapter for a detailed explanation of why the committee selected these outcomes.

No evidence was found on models of information sharing within multiprofessional teams or between multiprofessional teams.

There was no evidence relative to the critical outcomes of quality of life, preferred and actual place of care and death.

For the important outcomes, two studies reported patients’ satisfaction. There was no evidence on any of the other important outcomes of length of survival, length of stay, hospitalisation, number of hospital visits, number of visits to accident and emergency, number of unscheduled admissions, use of community services, avoidable/inappropriate admissions to ICU, inappropriate attempts at cardiopulmonary resuscitation, and staff satisfaction.

The quality of the evidence

The quality of the evidence ranged from very low to low. This was due to selection and performance bias, resulting in a high risk of bias rating, and imprecision.. The committee commented on the methodological issue of measuring satisfaction in end of life care, which can prove challenging as people are often either very dissatisfied or very satisfied this might polarise results. The measurement of satisfaction is further complicated by the fact that often papers do not report whether the care people received matched their expectations.

For both studies included in the review, the components of usual care were not described in detail and it was difficult to understand how the intervention was different. The maximum life expectancy of participants was also not stated, however, the Committee agreed that based on the characteristics reported in the studies, the population met the protocol criteria for inclusion in both cases.

The Committee noted that one of the studies included a population of people in whom life-prolonging therapies are still an active option and took this into consideration when assessing the evidence.

Benefits and harms

The Committee noted the evidence was limited, of low quality and only included patient satisfaction outcomes. They observed there was no clinically important difference in satisfaction between the groups where care included a standardised method to share information between MDT and services.

The Committee also noted that both studies examined paper record and notes as models of information sharing. The Committee acknowledged that these type of information sharing records were popular some years ago, but their use has been increasingly reduced since the introduction of IT-based systems (for example, EPaCCS and CANISC). The Committee discussed the variation in the implementation of digital systems across the UK and that these systems are not yet mandatory.

The Committee agreed they were not confident in making an evidence-based recommendation on what system to use. However, a consensus based recommendation on information sharing between organisations and services for people in the last year of life would be important, as this is fundamental to providing well-coordinated care and likely to improve care and health outcomes. The Committee agreed that commissioners and local planners of services should consider having a standardised information sharing system that can be accessed by the health and social care professional involved in the care of the person in their last year of life.

The Committee agreed the system should be digital, examples are EPaCCS or CANISC, which are currently used in some areas of England and Wales. Electronic information sharing has the benefit of being easily accessible to more than one user at a time and in different locations. Records can also be updated easily an the most up to date information is then easily communicated. The Committee also emphasised the importance of patients’ consent to information sharing and access to the information shared on the system.

While the Committee could not recommend what information should be recorded they agreed that it was important to make a consensus recommendation that once people are identified as being in the last year of life they should be added to an end of life care register and this information shared with other health and social care professionals involved in their care. This documentation is fundamental to ensuring people in the last year of life and their carers begin to receive appropriate support (see review on identification). In order to facilitate this, the Committee recommended a process should be in place to ensure this happens.

Cost effectiveness and resource use

No relevant economic evaluations were identified to determine the cost effectiveness of different methods of information sharing.

The committee discussed different methods and concluded that low cost methods of information sharing, such as patient held records, would be likely to reduce costs by reducing the duplication of tasks by numerous health care professionals without the need for significant upfront investment but that other more electronic methods of information sharing (such as EPaCCS) would require upfront investment in IT infrastructure and training to ensure all health care providers are able to easily access the electronic forms, however the committee thought that they would also be likely to reduce costs in the long term; although there is currently no evidence to support this.

The committee agreed that good information sharing between healthcare professionals and healthcare settings contributes towards delivering well-coordinated high quality care and reduces duplications of tasks which is currently very common. For this reason the committee recommended that commissioners, local planners and co-ordinators of health services consider having local standardised electronic information sharing systems.

Other factors the committee took into account

The Health and Social Care (Safety and Quality) Act 201543 introduces a new legal duty requiring health and adult social care bodies to share information where this will facilitate care for an individual. This guidance note explains what this new legislation requires and provides a clear message that subject to the preferences of the individuals concerned, sharing for the care of individuals is a requirement, not an option.

The Committee noted it would be desirable for a system to be in place where the care plan sits with the patient (and can be accessed/updated electronically by the patient), but this is not currently achieved in clinical practice.

It was also noted that a limitation of implementing EPaCCS is that they are large datasets which can be off-putting for some health care staff.

The Committee was aware of the ReSPECT (Recommended summary Plan for Emergency Care and Treatment) form (recently released in March 2017), a paper based and patient-held tool providing joint information on DNACPR and ACP for people at the end of life.

References

1.
Akhlaq A, McKinstry B, Muhammad KB, Sheikh A. Barriers and facilitators to health information exchange in low- and middle-income country settings: a systematic review. Health Policy and Planning. 2016; 31(9):1310–1325 [PubMed: 27185528]
2.
Algilani S, Langius-Eklöf A, Kihlgren A, Blomberg K. An interactive ICT platform for early assessment and management of patient-reported concerns among older adults living in ordinary housing - development and feasibility. Journal of Clinical Nursing. 2017; 26(11/12):1575–1583 [PubMed: 27381423]
3.
Ali AA, Adam R, Taylor D, Murchie P. Use of a structured palliative care summary in patients with established cancer is associated with reduced hospital admissions by out-of-hours general practitioners in Grampian. BMJ Supportive & Palliative Care. 2013; 3(4):452–455 [PubMed: 24950526]
4.
Allsop MJ, Kite S, McDermott S, Penn N, Millares-Martin P, Bennett MI. Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation. Palliative Medicine. 2016; 09:09 [PMC free article: PMC5405823] [PubMed: 27507636]
5.
Arora A, Mohiuddin I, Verda L. Evaluation of an interdisciplinary communication tool called tempo (team engagement to monitor patient outcome). Journal of General Internal Medicine. 2017; 32 (2 Supplement 1):S186–S187
6.
Asprey A, Richards SH, Wright C, Seamark C, Seamark D, Moxon J. Transferring information to an out-of-hours primary care service for patients with palliative care needs: An action research study to improve the use of handover forms. Primary Health Care Research & Development. 2013; 14(1):7–20 [PubMed: 23174127]
7.
Astrom K, Duggan C, Bates I. Evaluating an intervention to improve communication between healthcare professionals within secondary care. Pharmacy Education. 2007; 7(4):325–333
8.
Basta YL, Zwetsloot IM, Klinkenbijl JH, Rohof T, Monster MM, Fockens P et al. Decreasing the dispatch time of medical reports sent from hospital to primary care with Lean Six Sigma. Journal of Evaluation in Clinical Practice. 2016; 22(5):690–698 [PubMed: 26853431]
9.
Beyea A, Fischer J, Schenck A, Hanson LC. Integrating palliative care information and hospice referral in Medicaid primary care. Journal of Palliative Medicine. 2013; 16(4):376–382 [PubMed: 23461299]
10.
Bokhour BG. Communication in interdisciplinary team meetings: What are we talking about? Journal of Interprofessional Care. 2006; 20(4):349–363 [PubMed: 16905484]
11.
Boockvar KS, Livote EE, Goldstein N, Nebeker JR, Siu A, Fried T. Electronic health records and adverse drug events after patient transfer. Quality & Safety in Health Care. 2010; 19(5):e16 [PMC free article: PMC2965207] [PubMed: 20724395]
12.
Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine. 2014; 28(8):1000–1025 [PubMed: 24651708]
13.
Capurro D, Ganzinger M, Perez-Lu J, Knaup P. Effectiveness of eHealth interventions and information needs in palliative care: a systematic literature review. Journal of Medical Internet Research. 2014; 16(3):e72 [PMC free article: PMC3961802] [PubMed: 24610324]
14.
Carlsson E, Ehnfors M, Eldh AC, Ehrenberg A. Accuracy and continuity in discharge information for patients with eating difficulties after stroke. Journal of Clinical Nursing. 2012; 21(1-2):21–31 [PubMed: 21564355]
15.
Chan RJ, Webster J, Bowers A. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database of Systematic Reviews 2016, Issue 2. Art. No.: CD008006. DOI: 10.1002/14651858.CD008006.pub4. [PMC free article: PMC6483701] [PubMed: 26866512] [CrossRef]
16.
Chang PM, Liu YY, Chao TC, Lin HL, Chen MB, Chen PM et al. A new hospice consulting system for terminal cancer patients in transferring to post-acute care options in Taiwan. European Journal of Cancer Care. 2010; 19(2):267–272 [PubMed: 19709171]
17.
Cherry JC, Dryden K, Kobb R, Hilsen P, Nedd N. Opening a window of opportunity through technology and coordination: a multisite case study. Telemedicine Journal and e-Health. 2003; 9(3):265–271 [PubMed: 14611694]
18.
Cobler J, Wang G, Stout C, Piejak J, Rodts MF. Information sharing: Best practices that support transitions in care. Orthopaedic Nursing. 2017; 36(1):36–44 [PubMed: 28107299]
19.
Cornbleet MA, Campbell P, Murray S, Stevenson M, Bond S. Patient-held records in cancer and palliative care: A randomized, prospective trial. Palliative Medicine. 2002; 16(3):205–212 [PubMed: 12046996]
20.
Dahm MF, Wadensten B. Nurses’ experiences of and opinions about using standardised care plans in electronic health records-a questionnaire study. Journal of Clinical Nursing. 2008; 17(16):2137–2145 [PubMed: 18705735]
21.
De Bock GH, Van Kampen IM, Van der Goot JH, Hamstra M, Dekker JH, Schuit KW et al. Transfer of information on palliative home care during the out-of-hours period. Family Practice. 2011; 28(3):280–286 [PubMed: 21156753]
22.
Demiris G, Oliver DP, Wittenberg-Lyles E, Washington K. Video-mediated communication in hospice interdisciplinary team meetings: examining technical quality and content. AMIA Annual Symposium Proceedings/AMIA Symposium. 2009; 2009:135–139 [PMC free article: PMC2815404] [PubMed: 20351836]
23.
Demiris G, Washington K, Oliver DP, Wittenberg-Lyles E. A study of information flow in hospice interdisciplinary team meetings. Journal of Interprofessional Care. 2008; 22(6):621–629 [PMC free article: PMC2680071] [PubMed: 19012142]
24.
Dickinson R, Hall S, Sinclair JE, Bond C, Murchie P. Using technology to deliver cancer follow-up: A systematic review. BMC Cancer. 2014; 14 311 [PMC free article: PMC4101828] [PubMed: 24885758]
25.
Dorman S, Smith V, Kirkham S. The use of an electronic patient record to facilitate a specialist palliative care multidisciplinary team meeting. Palliative Medicine. 2010; 24(2):198–199 [PubMed: 19926648]
26.
Doyle J. Barriers and facilitators of multidisciplinary team working: a review. Paediatric Nursing. 2008; 20(2):26–29 [PubMed: 18350859]
27.
Drury M, Harcourt J, Minton M. The acceptability of patients with cancer holding their own shared-care record. Psycho-Oncology. 1996; 5(2):119–125
28.
Dubbert P, Lensing S, Sullivan DH, Aslakson RA, Ast K, Elk R et al. Concordance Between veterans’ self-report and documentation of surrogate decision makers: implications for quality measurement. Journal of Pain and Symptom Management. 2017; 53(1):1–4 [PubMed: 27876636]
29.
Duplan KL, Pirret AM. Documentation of cardiopulmonary resuscitation decisions in a New Zealand hospital: A prospective observational study. Intensive and Critical Care Nursing. 2016; 37:75–81 [PubMed: 27575617]
30.
Feltes M, Wetle T, Clemens E, Crabtree B, Dubitzky D, Kerr M. Case managers and physicians: Communication and perceived problems. Journal of the American Geriatrics Society. 1994; 42(1):5–10 [PubMed: 8277115]
31.
Gagnon MP, Legare F, Labrecque M, Fremont P, Pluye P, Gagnon J et al. Interventions for promoting information and communication technologies adoption in healthcare professionals. Cochrane Database of Systematic Reviews 2009, Issue 1. Art. No.: CD006093. DOI: 10.1002/14651858.CD006093.pub2. [PMC free article: PMC3973635] [PubMed: 19160265] [CrossRef]
32.
Georgiou A, Braithwaite J, Westbrook JI. Gaps, disconnections, and discontinuities - The role of information exchange in the delivery of quality long-term care. The Gerontologist. 2013; 53(5):770–779 [PubMed: 23103520]
33.
Griffiths D, Morphet J, Innes K, Crawford K, Williams A. Communication between residential aged care facilities and the emergency department: A review of the literature. International Journal of Nursing Studies. 2014; 51(11):1517–1523 [PubMed: 24996849]
34.
Grossman D, Rootenberg M, Perri GA, Yogaparan T, DeLeon M, Calabrese S et al. Enhancing communication in end-of-life care: a clinical tool translating between the Clinical Frailty Scale and the Palliative Performance Scale. Journal of the American Geriatrics Society. 2014; 62(8):1562–1567 [PubMed: 24962427]
35.
Gulmans J, Vollenbroek-Hutten MMR, Van Gemert-Pijnen JEWC, Van Harten WH. Evaluating quality of patient care communication in integrated care settings: A mixed method approach. International Journal for Quality in Health Care. 2007; 19(5):281–288 [PubMed: 17666425]
36.
Gum AM, Dautovich ND, Greene J, Hirsch A, Schonfeld L. Improving home-based providers’ communication to primary care providers to enhance care coordination. Aging & Mental Health. 2015; 19(10):921–931 [PubMed: 25401276]
37.
Gurwitz JH, Field TS, Ogarek J, Tjia J, Cutrona SL, Harrold LR et al. An electronic health record-based intervention to increase follow-up office visits and decrease rehospitalization in older adults. Journal of the American Geriatrics Society. 2014; 62(5):865–871 [PMC free article: PMC4351873] [PubMed: 24779524]
38.
Hall S, Murchie P, Campbell C, Murray SA. Introducing an electronic Palliative Care Summary (ePCS) in Scotland: patient, carer and professional perspectives. Family Practice. 2012; 29(5):576–585 [PubMed: 22337868]
39.
Hansebo G, Kihlgren M, Ljunggren G. Review of nursing documentation in nursing home wards - changes after intervention for individualized care. Journal of Advanced Nursing. 1999; 29(6):1462–1473 [PubMed: 10354242]
40.
Happell B, Platania-Phung C, Scott D, Nankivell J. Communication with colleagues: frequency of collaboration regarding physical health of consumers with mental illness. Perspectives in Psychiatric Care. 2014; 50(1):33–43 [PubMed: 24387613]
41.
Hedlund S. Northwest Cancer Specialists (NCS) CARES: Coordinated, advocacy, resources, education, and support: A palliative care program in an outpatient oncology practice. Omega: Journal of Death and Dying. 2013; 67(1-2):109–113 [PubMed: 23977785]
42.
Hendricks-Ferguson VL, Pradhan K, Shih C-S, Gauvain KM, Kane JR, Liu J et al. Pilot evaluation of a palliative and end-of-life communication intervention for parents of children with a brain tumor. Journal of Pediatric Oncology Nursing. 2017; 34(3):203–213 [PMC free article: PMC6711580] [PubMed: 27920233]
43.
HM Government. Health and Social Care (Safety and Quality) Act 2015. 2015. Available from: http://www​.legislation​.gov.uk/ukpga/2015​/28/contents/enacted/data.htm Last accessed: 22/11/2017.
44.
Houben CH, Spruit MA, Wouters EF, Janssen DJ. A randomised controlled trial on the efficacy of advance care planning on the quality of end-of-life care and communication in patients with COPD: The research protocol. BMJ Open. 2014; 4(1):e004465 [PMC free article: PMC3902375] [PubMed: 24384905]
45.
Houben CHM, Spruit MA, Groenen MTJ, Wouters EFM, Janssen DJA. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association. 2014; 15(7):477–489 [PubMed: 24598477]
46.
Houben CHM, Spruit MA, Wouters EFM, Janssen DJA. A randomised controlled trial on the efficacy of advance care planning on the quality of end-of-life care and communication in patients with COPD: The research protocol. BMJ Open. 2014; 4(1) [PMC free article: PMC3902375] [PubMed: 24384905]
47.
Kallen MA, Yang DS, Haas N. A technical solution to improving palliative and hospice care. Supportive Care in Cancer. 2012; 20(1):167–174 [PubMed: 21240650]
48.
Kiely F, Murphy M, O’Brien T. Information transfer to out-of-hours co-operatives: a survey of general practitioners’ views in relation to palliative patients. BMJ Supportive & Palliative Care. 2013; 3(4):405–411 [PubMed: 24950520]
49.
King N, Thomas K, Martin N, Bell D, Farrell S. ‘Now nobody falls through the net’: Practitioners’ perspectives on the Gold Standards Framework for community palliative care. Palliative Medicine. 2005; 19(8):619–627 [PubMed: 16450879]
50.
Knott CI, Psirides AJ, Young PJ, Sim D. A retrospective cohort study of the effect of medical emergency teams on documentation of advance care directives. Critical Care and Resuscitation. 2011; 13(3):167–174 [PubMed: 21880004]
51.
Komura K, Yamagishi A, Akizuki N, Kawagoe S, Kato M, Morita T et al. Patient-perceived usefulness and practical obstacles of patient-held records for cancer patients in Japan: OPTIM study. Palliative Medicine. 2013; 27(2):179–184 [PubMed: 22179597]
52.
Latimer EJ, Crabb MR, Roberts JG, Ewen M, Roberts J. The Patient Care Travelling Record in palliative care: effectiveness and efficiency. Journal of Pain and Symptom Management. 1998; 16(1):41–51 [PubMed: 9707656]
53.
Lau F, Downing M, Tayler C, Fassbender K, Lesperance M, Barnett J. Toward a population-based approach to End-of-Life Care Surveillance in Canada: Initial efforts and lessons. Journal of Palliative Care. 2013; 29(1):13–21 [PubMed: 23614166]
54.
Lilja M, Nygård L, Borell L. The transfer of information about geriatric clients in the occupational therapy chain of care: an intervention study. Scandinavian Journal of Occupational Therapy. 2000; 7(2):51–59
55.
Lindberg B, Nilsson C, Zotterman D, Soderberg S, Skar L. Using information and communication technology in home care for communication between patients, family members, and healthcare professionals: A systematic review. International Journal of Telemedicine and Applications. 2013; 2013:461829 [PMC free article: PMC3649237] [PubMed: 23690763]
56.
Lindner SA, Davoren JB, Vollmer A, Williams B, Landefeld CS. An electronic medical record intervention increased nursing home advance directive orders and documentation. Journal of the American Geriatrics Society. 2007; 55(7):1001–1006 [PubMed: 17608871]
57.
Lux EA, Hofmeister U, Bornemann R. Palliative approach in outpatient care in Westphalia-Lippe - Follow-up study five years after inception of a structured home-based palliative care system. Deutsche Medizinische Wochenschrift. 2016; 141(8):e67–e72 [PubMed: 27078252]
58.
Mahmood-Yousuf K, Munday D, King N, Dale J. Interprofessional relationships and communication in primary palliative care: Impact of the Gold Standards Framework. British Journal of General Practice. 2008; 58(549):256–263 [PMC free article: PMC2277111] [PubMed: 18387229]
59.
Martin ASH, Costello J, Griffiths J. Communication in palliative care: the applicability of the SAGE and THYME model in Singapore. International Journal of Palliative Nursing. 2017; 23(6):288–295 [PubMed: 28648130]
60.
Mason B, Buckingham S, Finucane A, Hutchison P, Kendall M, McCutcheon H et al. Improving primary palliative care in Scotland: Lessons from a mixed methods study. BMC Family Practice. 2015; 16:176 [PMC free article: PMC4676155] [PubMed: 26651488]
61.
McBride A, Burey L, Megahed M, Feldman C, Deaton C. The role of patient-held alert cards in promoting continuity of care for Heart Failure Patients. European Journal of Cardiovascular Nursing. 2014; 13(1):71–77 [PubMed: 23406674]
62.
McGough K, Ladd L. Facilitating communication and collaboration across the continuum: a transportable plan of care. Journal of Nursing Administration. 1999; 29(7-8):42, 56 [PubMed: 10451658]
63.
McSwiggan LC, Marston J, Campbell M, Kelly TB, Kroll T. Information‐sharing with respite care services for older adults: A qualitative exploration of carers’ experiences. Health & Social Care in the Community. 2017; 25(4):1404–1415 [PubMed: 28294463]
64.
Millington-Sanders C, Nadicksbernd JJ, O‘Sullivan C, Morgan T, Raleigh A, Yeun P et al. Electronic palliative care co-ordination system: an electronic record that supports communication for end-of-life care - a pilot in Richmond, UK. London Journal of Primary Care. 2013; 5(2):106–110 [PMC free article: PMC3960646] [PubMed: 25949700]
65.
Mohan CV, Phillips MJ, Corsin F. Communication and networking in a regional organisation. ‘In:’ Dodet, editor. The OIE Global Conference on Aquatic Animal Health. Developments in Biologicals. Basel: S. Karger AG. 2007. p. 73–79.
66.
Mola E, Maggio A, Vantaggiato L. Indicators of communication and degree of professional integration in healthcare. Igiene e sanita pubblica. 2009; 65(3):271–286 [PubMed: 19629153]
67.
Moore AR, Bastian RG, Apenteng BA. Communication within hospice interdisciplinary teams: A narrative review. American Journal of Hospice & Palliative Medicine. 2016; 33(10):996–1012 [PubMed: 26518351]
68.
Moran WP, Messick C, Guerette P, Anderson R, Bradham D, Wofford JL et al. A practice-based information system for multi-disciplinary care of chronically ill patients: what information do we need? The Community Care Coordination Network Database Group. Proceedings of the Annual Symposium on Computer Applications in Medical Care. 1994:585–589 [PMC free article: PMC2247887] [PubMed: 7949995]
69.
Morikawa M, Shirai Y, Ochiai R, Miyagawa K. Barriers to the collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients’ care: A qualitative study. American Journal of Hospice & Palliative Medicine. 2016; 33(10):977–984 [PubMed: 26494829]
70.
Mueller CA, Tetzlaff B, Theile G, Fleischmann N, Cavazzini C, Geister C et al. Interprofessional collaboration and communication in nursing homes: A qualitative exploration of problems in medical care for nursing home residents: Study protocol. Journal of Advanced Nursing. 2015; 71(2):451–457 [PubMed: 25338930]
71.
Nagpal K, Arora S, Vats A, Wong H, Sevdalis N, Vincent C et al. Failures in communication and information transfer across the surgical care pathway: Interview study. BMJ Quality and Safety. 2012; 21(10):843–849 [PubMed: 22773891]
72.
National Institute for Health and Care Excellence. Developing NICE guidelines: the manual. London. National Institute for Health and Care Excellence, 2014. Available from: http://www​.nice.org.uk​/article/PMG20/chapter​/1%20Introduction%20and%20overview [PubMed: 26677490]
73.
Ng B, Iqbal Z, Browne M. Information transfer for dying patients moving from home to hospital. European Journal of Palliative Care. 2017; 24(3):140–143
74.
O’Connor M, Erwin T, Dawson L. A means to an end: A web-based client management system in palliative care. Health Informatics Journal. 2009; 15(1):41–54 [PubMed: 19218311]
75.
Olsen RM, Østnor BrH, Enmarker I, Hellzén O. Barriers to information exchange during older patients’ transfer: Nurses’ experiences. Journal of Clinical Nursing. 2013; 22(19-20):2964–2973 [PubMed: 23742093]
76.
Omilion-Hodges LM, Swords NM. Communication Matters: Exploring the Intersection of Family and Practitioner End of Life Communication. Behavioral Sciences. 2017; 7(1):19 [PMC free article: PMC5371759] [PubMed: 28335501]
77.
Pautex S, Herrmann FR, Zulian GB. Role of advance directives in palliative care units: A prospective study. Palliative Medicine. 2008; 22(7):835–841 [PubMed: 18718993]
78.
Petrova M, Riley J, Abel J, Barclay S. Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from. BMJ Supportive & Palliative Care. 2016; Epublication [PMC free article: PMC6287568] [PubMed: 27638631]
79.
Press MJ, Gerber LM, Peng TR, Pesko MF, Feldman PH, Ouchida K et al. Postdischarge Communication Between Home Health Nurses and Physicians: Measurement, Quality, and Outcomes. Journal of the American Geriatrics Society. 2015; 63(7):1299–1305 [PubMed: 26115315]
80.
Price L. Economic evaluation of the implementation of an electronic palliative care coordination system (EPaCCS) in Lincolnshire using My RightCare. Burdett Trust for Nursing, OPM Group, Royal College of Nursing, St Barnabas Lincolnshire Hospice, 2016.
81.
Pringle A, Finucane A, Oxenham D. Improving electronic information sharing for palliative care patients. BMJ Quality Improvement Reports. 2014; 3:u201904.w201014 [PMC free article: PMC4645862] [PubMed: 26732697]
82.
Puntillo KA, McAdam JL. Communication between physicians and nurses as a target for improving end-of-life care in the intensive care unit: challenges and opportunities for moving forward. Critical Care Medicine. 2006; 34:(11 Suppl):S332–340 [PubMed: 17057595]
83.
Regnard C. Using videoconferencing in palliative care. Palliative Medicine. 2000; 14(6):519–528 [PubMed: 11219882]
84.
Reilly JB, Marcotte LM, Berns JS, Shea JA. Handoff communication between hospital and outpatient dialysis units at patient discharge: a qualitative study. Joint Commission journal on quality and patient safety / Joint Commission Resources. 2013; 39(2):70–76 [PubMed: 23427478]
85.
Resnick HE, Alwan M. Use of health information technology in home health and hospice agencies: United States, 2007. Journal of the American Medical Informatics Association. 2010; 17(4):389–395 [PMC free article: PMC2995658] [PubMed: 20595305]
86.
Roth RL, Lis G, O‘Connor N, Aseltyne KA. Evaluation of COMFORT in Strengthening Perceived Communication Confidence of Advanced Practice Registered Nurses. Journal of Hospice and Palliative Nursing. 2017; 19(1):59–66
87.
Sadavarte V, Jainer R, Hoptroff V, Yates R. Can improved documentation for children on advanced care plan (ACP) with life limiting (LL) conditions improve outcome? European Journal of Pediatrics. 2016; 175 (11):1658
88.
Schweitzer B, Blankenstein N, Slort W, Knol DL, Deliens L, Van Der Horst H. Writing information transfers for out-of-hours palliative care: A controlled trial among GPs. Scandinavian Journal of Primary Health Care. 2016; 34(2):186–195 [PMC free article: PMC4977942] [PubMed: 27092979]
89.
Schweitzer B, Blankenstein N, Willekens M, Terpstra E, Giesen P, Deliens L. GPs’ views on transfer of information about terminally ill patients to the out-of-hours co-operative. BMC Palliative Care. 2009; 8:19 [PMC free article: PMC2807852] [PubMed: 20028504]
90.
Schweitzer BP, Blankenstein N, Deliens L, van der Horst H. Out-of-hours palliative care provided by GP co-operatives: Availability, content and effect of transferred information. BMC Palliative Care. 2009; 8:17 [PMC free article: PMC2789043] [PubMed: 19943956]
91.
Shelby-James TM, Currow DC, Phillips PA, Williams H, Abernethy AP. Promoting patient centred palliative care through case conferencing. Australian Family Physician. 2007; 36(11):961–964 [PubMed: 18043787]
92.
Siemsen IMD, Madsen MDv, Pedersen LF, Michaelsen L, Pedersen AV, Andersen HB et al. Factors that impact on the safety of patient handovers: An interview study. Scandinavian Journal of Public Health. 2012; 40(5):439–448 [PubMed: 22798283]
93.
Sinha S, Belcher C, Torke A, Howard J, Caccamo M, Slaven JA et al. Development of a protocol for successful palliative care consultation in population of patients receiving mechanical circulatory support. Journal of Pain and Symptom Management. 2017; 54(4):583–588 [PubMed: 28716615]
94.
Smith C, Whitmore D, Hough L, Gough N, Cheung C-C, Thick M et al. Implementation of a locality end of life care register, now called Electronic Palliative Care Coordination System (EPCCS) – has it improved the information shared with out of hours services?. Journal of Health Service Research. 2012;
95.
Soares MM, Jacobs K, Waterson P, Eason K, Tutt D, Dent M. Using HIT to deliver integrated care for the frail elderly in the UK: current barriers and future challenges. Work. 2012; 41:4490–4493 4494p [PubMed: 22317413]
96.
Stiefel F, Nakamura K, Terui T, Ishitani K. Collusions between patients and clinicians in end-of-life care: why clarity matters. Journal of Pain and Symptom Management. 2017; 53(4):776–782 [PubMed: 28062352]
97.
Stinson J, Hussain A, Cafazzo J, D’Agostino N, Hodgson D, Jamieson T et al. Developing an online collaborative care tool for adolescents with cancer, their caregivers and healthcare professionals: A clinical usability test. Pediatric Blood and Cancer. 2015; 62:S193
98.
Tamang S, Kopec D, Shagas G, Levy K. Improving end of life care: an information systems approach to reducing medical errors. Studies in Health Technology and Informatics. 2005; 114:93–104 [PubMed: 15923765]
99.
Tanabe K, Sawada K, Shimada M, Kadoya S, Endo N, Ishiguro K et al. Evaluation of A Novel Information-Sharing Instrument for Home-Based Palliative Care: A Feasibility Study. American Journal of Hospice & Palliative Medicine. 2015; 32(6):611–619 [PMC free article: PMC4529405] [PubMed: 24814723]
100.
Taubert M, Nelson A. Out-of-hours GPs and palliative care-a qualitative study exploring information exchange and communication issues. BMC Palliative Care. 2010; 9:18 [PMC free article: PMC2927521] [PubMed: 20704741]
101.
Tobacman JK, Kissinger P, Wells M, Prokuski J, Hoyer M, McPherson P et al. Implementation of personal health records by case managers in a VAMC general medicine clinic. Patient Education and Counseling. 2004; 54(1):27–33 [PubMed: 15210257]
102.
Urquhart C, Currell R, Grant MJ, Hardiker NR. Nursing record systems: effects on nursing practice and healthcare outcomes. Cochrane Database of Systematic Reviews 2009, Issue 1. Art. No.: CD002099. DOI: 10.1002/14651858.CD002099.pub2. [PubMed: 19160206] [CrossRef]
103.
van Gurp J, van Selm M, van Leeuwen E, Hasselaar J. Transmural palliative care by means of teleconsultation: A window of opportunities and new restrictions. BMC Medical Ethics. 2013; 14:12 [PMC free article: PMC3608168] [PubMed: 23497307]
104.
Vickridge R. Collaborative working for good practice in palliative care. Journal of Interprofessional Care. 1998; 12(1):63–67
105.
Villarreal D, Restrepo MI, Healy J, Howard B, Tidwell J, Ross J et al. A model for increasing palliative care in the intensive care unit: Enhancing interprofessional consultation rates and communication. Journal of Pain and Symptom Management. 2011; 42(5):676–679 [PubMed: 22045372]
106.
Wagner LM, Damianakis T, Mafrici N, Robinson-Holt K. Falls communication patterns among nursing staff working in long-term care settings. Clinical Nursing Research. 2010; 19(3):311–326 [PubMed: 20601640]
107.
Walsh D, Zhukovsky DS. Communication in palliative medicine: A pilot study of a problem list to capture complex medical information. American Journal of Hospice & Palliative Medicine. 2004; 21(5):365–371 [PubMed: 15510574]
108.
Wittenberg-Lyles EM. Information Sharing in Interdisciplinary Team Meetings: An Evaluation of Hospice Goals. Qualitative Health Research. 2005; 15(10):1377–1391 [PubMed: 16263918]

Appendices

Appendix B. Literature search strategies

The literature searches for this review are detailed below and complied with the methodology outlined in Developing NICE guidelines: the manual 2014, updated 2017 https://www.nice.org.uk/guidance/pmg20/resources/developing-nice-guidelines-the-manual-pdf-72286708700869

For more detailed information, please see the Methodology Review.

B.1. Clinical search literature search strategy

Searches for were constructed using a PICO framework where population (P) terms were combined with Intervention (I) and in some cases Comparison (C) terms. Outcomes (O) are rarely used in search strategies for interventions as these concepts may not be well described in title, abstract or indexes and therefore difficult to retrieve. Search filters were applied to the search where appropriate.

Table 7. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

Cochrane Library (Wiley) search terms

CINAHL (EBSCO) search terms

PsycINFO (ProQuest) search terms

HMIC (Ovid) search terms

SPP (Ovid) search terms

ASSIA (ProQuest) search terms

B.2. Health Economics literature search strategy

Health economic evidence was identified by conducting a broad search relating to end of life care in NHS Economic Evaluation Database (NHS EED – this ceased to be updated after March 2015) and the Health Technology Assessment database (HTA) with no date restrictions. NHS EED and HTA databases are hosted by the Centre for Research and Dissemination (CRD). Additional searches were run on Medline and Embase for health economics, economic modelling and quality of life studies.

Table 8. Database date parameters and filters used

Medline (Ovid) search terms

Embase (Ovid) search terms

NHS EED and HTA (CRD) search terms

Appendix D. Clinical evidence tables

Download PDF (157K)

Appendix E. Forest plots

E.1. Model of information sharing between multiprofessional teams and services versus usual care

E.1.2. Patient-held information (Patient care travelling record) versus usual care (Latimer 1998)

Figure 10. Patient reported outcome – satisfaction (satisfaction, General Satisfaction Questionnaire 0-5) at 2 months

Appendix H. Research Recommendation

RR2 What are the advantages of using electronic registers and information sharing databases and which ones perform best for the care of people in the last year of life?

Why this is important

The guideline committee made several recommendations about the need to record when people are identified as entering the last year of life, as well as need to share this and subsequent information during the course of the illness, with other members of the professional teams involved in the care. The committee was aware that in the past, the majority of this information recording and sharing has been done using paper-based systems, relayed between teams and settings using telephone, fax and emails. However, fully electronic databases and information sharing systems using internet protocols are becoming more established in the NHS and also in hospice services. The committee looked for research evidence about which systems performed better and were more reliable for sharing confidential information, but it was unable to find it. Studies conducted in other countries using electronic systems were thought not applicable to the NHS.

It is therefore recommended that research should be done on the systems that are currently available in the UK. The purpose of this research would be to inform healthcare planners and service providers on the most efficient, reliable, secure and confidential, and cost-effective systems to be used for sharing information about the last year of life across a range of settings.

PICO question

What are the advantages of using electronic registers and information sharing databases and which ones perform best for the care of people in the last year of life?

Population: Adults in the last year of life, with a balance of cancer and non-cancer medical conditions.

Intervention(s): Use of an electronic register and database for recording that a person is entering the last year of life; their holistic needs and advance care plans; updating needs and plans at key transition points; sharing information between teams in different care settings; use of the database for key information about carers and other people important to the dying person. The system should be able to disseminate information by internet using safe protocols and ideally on a full range of data capture and display platforms.

Comparison: Use of conventional information recording and sharing systems, namely paper-based case-notes, fax, email and telephone messages. Standalone electronic systems, eg embedded in one hospital trust or one hospice, or only used in GP practices, but which are not shared across care settings would also be a comparator with a truly shared electronic, internet-enabled register and database.

Outcome(s): The number of people recorded as being in the last year of life; the number of holistic needs assessments and advance care plans carried out; documentation that correct and up to date information on carers and other people important to the dying person has been recorded and shared; the time to produce discharge reports and letters;the time to communicate reports and letters between settings of care at discharge or on transfer of care;; no loss of confidential information.

Importance to patients or the populationThe committee made several recommendations about the critical value of recording and sharing information about the prognosis of the patient, holistic needs assessments and care plans, and being able to update these assessments and plans. In addition, it is crucial to good end of life care to be able to share this information in real time between different healthcare professionals and social care practitioners, eg on different shifts or out of hours. When patients are being discharged from hospital to their usual place or residence, or between different care settings, it is again important to have such information flowing in anticipation of the move and soon afterwards to capture clinical and healthcare need changes. Ambulance services taking people home or between settings should also be able to access this information. Crucially, all relevant health and social care information needs to be available at times of crisis out of hours. It is important to know if current electronic systems can achieve these requirements, or if next generation systems are required.
Relevance to NICE guidanceThere are many recommendations in the guideline about the need to record and share information electronically about the person’s condition, holistic needs and care plans, [give recs] but the committee was unable to recommend any particular electronic system.
Relevance to the NHSAs electronic databases and clinical information systems are being increasingly used in the NHS, there has been a range of implementations that can be used for the care of people in the last year of life (EPACCS, CANISC etc). Different parts of the NHS use widely different IT systems which can impede data-sharing. It would be great value to care of dying people if the research could show that one system had advantages over others.
National prioritiesWith the recent withdrawal of the National Council for Palliative Care’s annual national Minimum Data-Set collection, there is no current method of generating country and region-level data on end of life care. The use of efficient and confidential electronic systems could be of great value to healthcare planners, as well as service level providers of care.
Current evidence baseThe committee was unable to find research evidence for the superiority of any particular electronic system for registering when a person is entering the last year of life and recording their holistic needs and care plans.
Equality
Study designThis research should be able to compare the performance of a complete electronic package for recording and sharing data promptly, safely and confidentially between healthcare professionals and social care practitioners, and between different teams and care settings. Because of the risks that could arise from running a fully electronic and internet system alongside a conventional paper, telephone and email-based system, it is envisaged that a pre- and post-installation design would be used; or a parallel cohort or cluster randomisation where one locality would use a new electronic system and be compared with another matched locality using the conventional system.
FeasibilityBecause of the known difficulties of implementing IT changes in the NHS, there would need to be carefully designed strategies for testing feasibility, security and confidentiality.
Other comments
ImportanceHigh: the research is essential to inform future updates of key recommendations in the guideline. It will also be of value for healthcare planners and service providers to be guided on the most efficient, effective and cost-effective electronic systems to use in end of life care.

Appendix I. Excluded studies

I.2. Excluded economic studies

There were no excluded economic studies for this review.

Final

Evidence review

Developed by the National Guideline Centre, hosted by the Royal College of Physicians

Disclaimer: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users. The recommendations in this guideline are not mandatory and the guideline does not override the responsibility of healthcare professionals to make decisions appropriate to the circumstances of the individual patient, in consultation with the patient and/or their carer or guardian.

Local commissioners and/or providers have a responsibility to enable the guideline to be applied when individual health professionals and their patients or service users wish to use it. They should do so in the context of local and national priorities for funding and developing services, and in light of their duties to have due regard to the need to eliminate unlawful discrimination, to advance equality of opportunity and to reduce health inequalities. Nothing in this guideline should be interpreted in a way that would be inconsistent with compliance with those duties.

NICE guidelines cover health and care in England. Decisions on how they apply in other UK countries are made by ministers in the Welsh Government, Scottish Government, and Northern Ireland Executive. All NICE guidance is subject to regular review and may be updated or withdrawn.

Copyright © NICE 2019.
Bookshelf ID: NBK558761PMID: 32614552

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