Tailoring healthcare services for each patient

National Clinical Guideline Centre (UK)

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National Clinical Guideline Centre (UK). Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms. London: Royal College of Physicians (UK); 2012 Feb. (NICE Clinical Guidelines, No. 138.)

See 2021 Partial Update

Update information: June 2021: the section on shared decision making was replaced by the NICE guideline on shared decision making. Minor updates June 2021: appendix A on recommendations adapted from published clinical guidelines was removed. February 2020: the quality statements in the guideline was replaced with a link to the updated NICE quality standard on patient experience in adult NHS services. October 2015: recommendation 1.4.3 was updated to cite the Health and Social Care Safety and Quality Act 2015. You can see these changes at www.nice.org.uk/cg138

Update information: June 2021: the section on shared decision making was replaced by the NICE guideline on shared decision making. Minor updates June 2021: appendix A on recommendations adapted from published clinical guidelines was removed. February 2020: the quality statements in the guideline was replaced with a link to the updated NICE quality standard on patient experience in adult NHS services. October 2015: recommendation 1.4.3 was updated to cite the Health and Social Care Safety and Quality Act 2015. You can see these changes at www.nice.org.uk/cg138

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Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms.

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8Tailoring healthcare services for each patient

8.1. Introduction

The development of evidence based healthcare and the need to deliver efficient care risks industrialising the processes of care and potentially jeopardising the essential human nature of these interactions. In order to ensure that the human nature of health care is not lost, it is necessary to understand what aspects of individuality and service responsiveness are important and valued by patients.

To provide the best experience of care health care professionals and health services must tailor services to recognise patients as individuals and to respond to their needs, preferences, and values, taking into account both shared requirements and individual characteristics (such as individuals’ expectations of service, their cultural background, gender, and even subtle issues such as preferences for humour etc).

Services should recognise that the evaluation of patient experiences is complex and evolving. While patient-reported outcomes measures often have a history of robust development, the robustness of patient experiences measures, in terms of properties such as reliability and validity, is often less clear. Satisfaction as a concept that reflects the way in which patients evaluate their care has been challenged and further work is needed to develop instruments that better capture the ways In which patients want to report their experiences²⁰^,¹¹⁸^,¹¹⁹.

8.2. Evidence reviews and other inputs

Each of the following sources of evidence and information has been used to inform the recommendations on responsiveness of service – an individualised approach and a discussion of this is presented in section Recommendations and link to evidence.

8.2.1. Patient experience scoping study - a focused thematic qualitative overview review

The patient experience scoping study (please see Appendix B for the full report) identified aspects related to the patient as an individual in all the three areas examined. The findings are summarized in Table 11 below.

Table 11

Sub-themes from the patient experience scoping study related to Tailoring healthcare services for each patient.

In developing an individualised approach to service provision, health services should regularly seek feedback and act on results, to ensure the care they provide is patient-centred. While major reconfigurations in service provision can be difficult and costly, sometimes providing an individualised approach can be about the small things. For example ensuring consultations don’t feel rushed so patients feel able to ask questions. Studies have found that where more time was allowed, patients felt care was more personal and they were able to participate⁹^,⁴²^,⁴³^,⁴⁷^,¹⁰⁵^–¹⁰⁷^,¹²⁰.

8.2.2. Existing NICE recommendations

The following recommendations, related to the responsiveness of services, are already in existence in other published NICE guidelines (please see Appendix C for more details on existing NICE recommendations):

Accept that patients may have different views from healthcare professionals about the balance of risks, benefits and side effects of medicines.
(From ‘Medicines Adherence’, R1.1.13)⁷⁹
Accept that the patient has the right to decide not to take a medicine, even if you do not agree with the decision, as long as the patient has the capacity to make an informed decision and has been provided with the information needed to make such a decision.
(From ‘Medicines Adherence’, R1.1.15)⁷⁹
Assess the patient’s capacity to make each decision using the principles in the Mental Capacity Act (2005) (www.opsi.gov.uk/ACTS/acts2005/ukpga_20050009_en_1). To lack capacity patients must: (a) have an impairment of or disturbance or malfunction of brain and mind, and (b) demonstrate lack of capacity to:
- understand the information relevant to the decision
- retain information for long enough to use it in the decision
- use or weigh information as part of the process of making the decision
- communicate the decision (whether by talking, using sign language or any other means).
  (From ‘Medicines adherence’, R 1.1.16)⁷⁹
Review patient knowledge, understanding and concerns about medicines, and a patient’s view of their need for medicine at intervals agreed with the patient, because these may change over time. Offer repeat information and review to patients, especially when treating long-term conditions with multiple medicines.
(From ‘Medicines Adherence’, R 1.3.1)⁷⁹
The named midwife or doctor should tell the woman about relevant services (such as drug and alcohol misuse support services) and encourage them to access these according to her individual needs.
(From ‘Pregnancy and complex social factors’, R 1.2.9)⁸⁵

8.3. Recommendations and link to evidence

An individualised approach to services

Recommendations	21. Adopt an individualised approach to healthcare services that is tailored to the patient’s needs and circumstances, taking into account their ability to access services, personal preferences and coexisting conditions. Review the patient’s needs and circumstances regularly. 22. Inform the patient about healthcare services and social services (for example, smoking cessation services) that are available locally and nationally. Encourage and support them to access services according to their individual needs and preferences. 23. Give the patient information about relevant treatment options and services that they are entitled to, even if these are not provided locally.
Relative values of different outcomes
Trade off between clinical benefits and harms	The GDG considered no harms were likely.
Economic considerations	The GDG considered that while tailoring services may require greater resource use than if this is not done, this is an essential part of good patient care. Other recommendations were considered to have minimal economic implications.
Quality of evidence	The evidence used was from the patient experience scoping study and consensus to develop the recommendations.
Other considerations	The GDG recognised that services are generally developed to cater for populations but considered that care must be taken to tailor services to individuals who require them. The GDG emphasised the importance of the patient being the centre of the healthcare service and as a consequence the healthcare professionals should respond to the patient’s situation and requirement as much as possible. A common experience is for patients to be given appointments at times that are difficult for them and not to be given option of where they receive treatment. The GDG were clear that treatment and services needed to be centred on the individual rather than on the condition. For patients with multiple problems this requirement is particularly important. The GDG considered that patients have a right to be made aware of different treatment options even if the local service does not have the expertise or equipment to deliver that treatment. The individual patient need should be considered and the patient fully informed.

Patient views and preferences

Recommendations	24. Hold discussions in a way that encourages the patient to express their personal needs and preferences for care, treatment, management and self-management. Allow adequate time so that discussions do not feel rushed. 25. Review with the patient at intervals agreed with them: their knowledge, understanding and concerns about their condition and treatments their view of their need for treatment. 26. Accept that the patient may have different views from healthcare professionals about the balance of risks, benefits and consequences of treatments. 27. Accept that the patient has the right to decide not to have a treatment, even if you do not agree with their decision, as long as they have the capacity to make an informed decision (see recommendation 20) and have been given and understand the information needed to do this. 28. Respect and support the patient in their choice of treatment, or if they decide to decline treatment. 29. Ensure that the patient knows that they can ask for a second opinion from a different healthcare professional, and if necessary how they would go about this.
Relative values of different outcomes
Trade off between clinical benefits and harms	The GDG considered no harms were likely.
Economic considerations	Most of these recommendations are about attitudes to patients’ preferences and as such the GDG considered them not to have economic implications. The GDG considered that while allowing adequate time for discussions and regular reviews may require greater resource use than if this is not done, this is an essential part of good patient care to ensure patients are adequately informed.
Quality of evidence	The GDG used evidence from the patient experience scoping study and consensus to develop the recommendations.
Other considerations	Allowing patients to express their personal needs and preferences is a pre- requisite to tailoring services to the individual patient. There can be an imbalance both in power and knowledge between healthcare professionals and patients. Effort is therefore required to both inform patients but also to ensure that they can express their personal needs and preferences. Attention to the environment such as adequate privacy and adequate time may need to be available to ensure the patient can express their needs and preferences.

Involvement of family members and carers

Recommendations	30. Clarify with the patient at the first point of contact whether and how they would like their partner, family members and/or carers to be involved in key decisions about the management of their condition. Review this regularly. If the patient agrees, share information with their partner, family members and/or carers. 31. If the patient cannot indicate their agreement to share information, ensure that family members and/or carers are kept involved and appropriately informed, but be mindful of any potentially sensitive issues and the duty of confidentiality.
Relative values of different outcomes
Trade off between clinical benefits and harms	The GDG considered no harms were likely.
Economic considerations	The GDG considered these recommendations to have minimal economic implications.
Quality of evidence
Other considerations	Patients vary in regards to whether or not they wish for family and friends to be involved in their healthcare encounters and how much involvement they want their family and friends to have. This can only be ascertained by asking individual patients and should be clarified regularly with all patients. The GDG recognised the importance of confidentiality of patient information and the need to obtain consent, but considered the difficulties involved when family and friends need information but the patient cannot give consent to share information. The GDG had experience of healthcare professionals being obstructive when carers might need information to help them in their care of a relative.

Feedback and complaints

Recommendations	32. Encourage the patient to give feedback about their care. Respond to any feedback given. 33. If necessary, provide patients with information about complaints procedures and help them to access these.
Relative values of different outcomes
Trade off between clinical benefits and harms	The GDG considered no harms were likely.
Economic considerations	The GDG considered that while this may require a greater resource use than if this is not done, this is an essential part of good patient care. It was noted that complaint systems should already be in place as part of healthcare governance.
Quality of evidence	The GDG used evidence from the patient experience scoping study and consensus to develop the recommendations.
Other considerations	Individual healthcare practitioners and services need information and feedback about compliments and complaints to assess how well they are addressing patients’ need. The GDG did not review evidence on methods of feedback but were aware that different methods can elicit different aspects of feedback and therefore multiple formats should be available and used.

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National Clinical Guideline Centre (UK). Patient Experience in Adult NHS Services: Improving the Experience of Care for People Using Adult NHS Services: Patient Experience in Generic Terms. London: Royal College of Physicians (UK); 2012 Feb. (NICE Clinical Guidelines, No. 138.) 8, Tailoring healthcare services for each patient.
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