Gathering Patient Stories Guideline...Improving and enhancing the patient’s journey is central to...

CLP 16a Gathering Patient Stories Guideline

INITIATED BY: Patient Experience Manager

PROVED BY:

Nursing and Midwifery Committee

DATE APPROVED:

4th March 2010

VERSION:

1.1

OPERATIONAL DATE:

4th March 2010

DATE FOR REVIEW:

4th March 2013

DISTRIBUTION:

Executive Directors, Divisional Directors, Divisional General Managers & Divisional Nurses Clinical Directors, Directorate Managers & Heads of Nursing

FREEDOM OF INFORMATION STATUS:

Open

Gathering Patient Stories Guidelines V1.1

CONTENTS 1. Purpose .......................................................................... 2 2. Guideline Statement ......................................................... 2 3. Scope ............................................................................. 3 4. Legislative and NHS Requirements .................................... 3 5. Procedure ....................................................................... 3 6. Review, Monitoring and Audit Arrangements ...................... 3 7. Retention or Archiving ...................................................... 3 8. Non Conformance ............................................................ 4 9. Equality Impact Assessment ............................................. 4 10. References ...................................................................... 4 11. What are patient stories? ................................................. 5 12. A Meeting Agenda Item 0 ................................................. 5 13. How will using patient stories benefit my improvement project? ................................................................................... 6 14. Preparing ........................................................................ 7 15. The Process .................................................................... 7 16. Do I need Research Ethics Committee Approval? ................ 8 17. Consent Process .............................................................. 9 18. The Interview – How do I collect stories? ........................ 10 19. Tips for taking stories: ................................................... 10 20. Should I be aware of any pitfalls? ................................... 11 21. Methods of gathering stories .......................................... 12 22. Getting the most out of stories ....................................... 13 23. Storing Stories ............................................................... 13 24. Doing something afterwards ........................................... 14 Appendix 1–Quick Decision guide for Patient Stories ................. 16 Appendix 2 – Sample 1 Consent Form for Patient Stories ........... 18 New: Insert under 12. What patient stories are not Agenda Item 0. Date change agreed? New version 1.1.

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1. Purpose The following guidelines are based on guidance used through the 1000 Lives Campaign in relation to taking patient stories. The guidelines are intended to support staff and provide enough information to guide them in the development of an improvement project using patient stories. Patient stories can be a powerful tool to improve services, gain feedback and highlight the patient’s experience. Useful stories can also be gathered from staff, volunteers, relatives and carers. 2. Guideline Statement Clinical Governance is driving the process of continuous improvement and quality assurance. Enhancing and improving the patients experience will be an important component of this process. A common criticism of health organisations is that it sometimes fails to reflect or respond to the views and experience of patients and public when planning and delivering services. The focus is on improving the patient’s journey, to compliment clinical care and maximise the patient experience. The Patient Experience Department has been created to help coordinate quality improvement from a patient perspective. The Patient Experience Manager will focus on developing a positive patient experience, by encouraging patient stories across the HB. Patient stories will ensure that the patient’s voice is recognised as being centrally important in the drive for service improvement. These guidelines focus on patient stories but can also be followed for stories taken from staff, relatives or carers.

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3. Scope These guidelines will apply to all stories undertaken across the organisation. It applies to all staff that provide services for or on behalf of the Heath Board. 4. Legislative and NHS Requirements Improving and enhancing the patient’s journey is central to the overall quality of each patient’s experience of the LHB. “Asking patients what they think about the care and treatment they have received is an important step towards improving care for patients in hospitals and other health services.” Quote: Professor Sir Ian Kennedy, Chair, Healthcare Commission, 2004. 5. Procedure Detailed information setting out the process for developing stories are contained in these guidelines. 6. Review, Monitoring and Audit Arrangements These guidelines will be reviewed at least once every three years or sooner if necessary. The Health Board will monitor the effectiveness of gathering stories with regular audits. 7. Retention or Archiving The Patient Experience Manager will ensure that copies of these guidelines are archived and stored in line with the Records Management Strategy and are made available for reference purposes should the situation arise.

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8. Non Conformance There is a requirement of all staff to comply with the provisions of these guidelines and where requested to demonstrate such compliance. This is a key element in achieving a consistent and effective approach to capturing the patient experience across the LHB. 9. Equality Impact Assessment Following assessment, this policy is not felt to be discriminatory or detrimental in any way with regard to the following equality strands: Gender; Race; Disability; Age; Sexual Orientation; Religion or Belief; Welsh Language or Human Rights 10. References 1000 Lives Campaign Guidance Former Caerphilly Teaching Local Health Board

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INTRODUCTION 11. What are patient stories? If you want to know what it is like to be a patient then the one solution is to listen to patients. “If we want to know how a person feels, we must begin by acknowledging the fact that there is one and only one observer stationed at the critical point of view ... [she] is the only person who has even the slightest chance of describing ‘the view from in here’, which is why [her] claims serve as the gold standard against which all other measures are measured.” (Gilbert 2006) A patient story is where a patient describes their experience of healthcare in their own words. The idea is to gain an understanding of what it is like as a patient what was good, what was bad and what would make the experience more positive. Taking stories is not a negative exercise. It is not just about attempting to find out where things went wrong. Listening to stories also gives us a wonderful opportunity to learn about the things that we do well and share them. An individual story is not in itself representative of all patient experiences. However, each story is valid, as that is how that individual experienced healthcare. Collectively, stories can help us to build a picture of what it is like to receive healthcare and how we can improve. 12. A Meeting Agenda Item 0 A requirement of Cwm Taf Health Board is to begin every meeting with an Agenda Item 0, to ensure that the patient is at the forefront of everything we do. There is a significant difference between a patient story and an item 0.

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• Will not identify the patient; • Does not use a patient’s own words; • Should be the staff and not the patients

interpretation of events; • Should have actions linked to it; • Should promote staff learning/ reflection and debate.

All Meeting Agenda Item 0 presentations must be logged with the Patient Experience Department. To present a patient story at a meeting the full guidelines should be adhered to. 13. How will using patient stories benefit my improvement project? Listening to patients helps us to see many things that we may not otherwise notice. Patients are the constant in any healthcare experience. Different professionals come in and out of their lives with specific roles to play, but do not always have the opportunity to understand the ‘big picture’. Taking a patient’s story is a powerful way of understanding this ‘big picture’. This understanding can then lead to making changes that will improve care for other people. Patient stories:

• Put patients at the heart of service development and improvement;

• Empower the story teller; • Give a voice to those “seldom heard”; • Change perceptions; • Identify where systems/processes need to be

improved; • Identify areas of good practice; • Highlight/manage complaints.

Staff are urged to be absolutely certain at the start of the process of the specific reason why stories are being gathered:

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• What it is that needs to be understood? • What will this information be used for?

14. Preparing It is important to be clear about the purpose for gathering the story in the first place, and to identify who will be the intended audience(s). The first thing you need to do is to find out how Cwm Taf Health Board is supporting the gathering of patient stories. There are trained staff in the organisation who are experienced in patient stories and who will be a valuable resource to you. These could be staff that have been through the RCN Clinical Leadership Programme, Staff involved with the 1000 Lives Campaign or staff within the Patient Experience Department. This information can be obtained by contacting the Patient Experience Manager on 01685 728581. 15. The Process The Patient Experience Manager should be informed of any plans to collect patient stories and any action plans/service improvements arising from the stories. A short proposal should be submitted to the Patient Experience Department for review before the story is undertaken. The proposal should clearly outline the main steps you will take and the intended outcome, for example:

• How the patient will be recruited? - ideally patients should not be currently receiving healthcare;

• Date and venue for gathering the story and plan for undertaking consent (a copy of the consent form should also be included);

• Copy of the Information leaflet which will be given to the patient relating to why you wish to gather their story;

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• You should have no involvement in providing care for the patient;

• You should also consider the patients different abilities to tell their stories, consider other forms of communication e.g. art therapy;

• Look at “buddying up” with a different service area and taking stories for each other;

• It may be helpful to involve someone with a clinical knowledge to spot problems but not to compromise the patient’s answers;

• It is important that the interviewer uses good listening and questioning skills;

• Promote the opportunity within your service area by displaying posters, providing information leaflets or asking patients whether they want to take part;

• Allow patients adequate time to consider the information you provide and to ask any questions;

• A good time to approach patients is during the time following a decision that they are ready for discharge and before they leave hospital;

• Contact could be made after discharge as long as the patient has given their permission for follow up contact.

16. Do I need Research Ethics Committee Approval? The ethics question often arises when embarking upon a quality improvement process. Formal ethics committee approval for the gathering of patient stories is not always necessary; however, it is absolutely essential to carry out what you do in an ethical way. If the story taking is part of a formal research project, then Ethics Committee approval is required. If you are unsure, it may be worth seeking advice from your local ethics committee, the Research Risk Review Group. It could equally be argued that it would be unethical not to consider patient views as part of your improvement process. To make sure you take stories in an ethical way, you need to:

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• Provide the storyteller with adequate information that is easy to understand;

• Not pressurise them into telling their story; • Be explicit about what will actually happen. For

example, be clear about how you will take the story (notes / tape recorder / video) and what will happen to the story afterwards;

• Make sure that you get formal consent from the storyteller before you start;

• Maintain their confidentiality; • Respect the storytellers wish to remain anonymous if

that is the case; • Make sure the storyteller understands that, if you

hear something untoward that puts others at risk, you will have to do something further with that information;

• Make sure that you have the commitment from your work team / manager before you start that you will do something with the information afterwards i.e. that the process will be of benefit;

• Make sure that the storyteller feels able to talk. It is recommended that the person taking the story should not be someone involved in providing direct care to the patient, either in the past or in the future;

• Be able to offer support after the story if needed. Story telling can be an emotional experience for both the patient and the person taking the story. Support could be in the form of access to counselling, however this will not always be necessary but it should be there if needed. The person taking the story may also need support, for example a debrief if particularly distressing;

• Allow the storyteller to stop at any time. 17. Consent Process When a story is collected, written consent at the appropriate level must be obtained (i.e service improvement and/or teaching). Further information around the application of story taking can be found in

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Appendix 1. The consent that you gain will not allow you to use the story for other purposes. If you wish to use the story for a new purpose, you must go back to the patient to obtain their consent. You must ensure that the storyteller has an understanding of the process and is therefore able to make an informed decision about whether or not to take part. If you are not certain, an approach that you could take is to collect the story as part of your improvement work, but seek the patient’s consent to be contacted again in the future should another use for the story arise. Patients may raise issues that are of concern to others during their story. You must make the storyteller aware during the consent process that if anything is raised that could be of potential harm to others that you will have to stop taking the story and take necessary action. Examples of consent forms can be found in Appendix 2 18. The Interview – How do I collect stories? Stories should be taken somewhere that is away from the place where healthcare was received where the patient and the listener feel comfortable. Somewhere that is quiet and where there will be no interruptions. If the storyteller prefers to tell their story in their own home you will need to consider your organisation’s policy on lone working and make sure that taking the story does not put you, or the storyteller, at any risk. When taking the story always remember that it is your role to prompt the story not to lead the storyteller into telling you what you might like to hear, or indeed what the storyteller thinks you want to hear. 19. Tips for taking stories: Useful prompts:

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• Tell me about when you became unwell... • Tell me about the care you received... • What do you remember most? • What was your care like? • Do you have a significant memory of your care? • Was there anything that surprised/worried/pleased

you? • Tell me more about.... • You said this [ ], can you help me understand that a

bit better please? • How did that make you feel? • Think about your body language and facial

expressions; • Try and keep the conversation open and relaxed.

20. Should I be aware of any pitfalls? In the same way that it is natural to feel proud when someone praises what you do, it is natural to feel defensive when someone makes a criticism. It is important to be aware of your personal reactions and how your reaction can influence the storyteller. For example,

• if you look horrified at something they say you may encourage/discourage them to pursue that line of thought however, no reaction would appear strange;

• maintain a healthy balance of empathy that encourages the story to be told;

• it is not your role when taking a story to answer questions or solve any dilemmas;

• it is important to be clear at the outset about what the process will involve so that the patient understands why you are there and does not feel disillusioned if unrealistic expectations are not met.

Patients may start the process with a view that everything was rosy and simply want to praise the system. By asking those to help you understand what it was that made them feel good you can encourage them to talk. You may also uncover some things that were not so good – often

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referred to ‘small’ issues, but ones that in reality make a huge impact on individual experience. 21. Methods of gathering stories Audio recording stories, allow you to concentrate on the discussion whilst you are with the patient instead of worrying about keeping accurate notes of what is being said. It allows you to re-listen to the story with a colleague who may hear different things to you. Audio recording of stories allows you to retain the patient’s anonymity. Assuming you have appropriate consent, you can use quotes or clips from the stories in other situations without the need to say who or where they came from. This may encourage patients to speak more freely about their experiences. Filming the story opens up a host of potential uses but you need to be sure that the consent that you take must cover where it will be shown. This approach will require a lot more planning and resources. It may be that you decide to take stories initially via another mechanism and film specific ones afterwards. If you feel unable to do either of these, discuss in your team the opportunities that already exist for patients to provide feedback on their experiences within day to day practice. It may be that you can collect valuable information through these but bear in mind that you may not get the full picture. The storyteller must be made aware that the information given may need to be used to effect change. However the storyteller may choose to remain anonymous and if so this should be strictly observed. The interviewer should make it clear that resulting service changes may be limited, and must not raise expectations. Plenty of time should be allowed to carry out the interviews. The interviewer may have an idea of the direction of the story, but it is important to be flexible as

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the patient may decide to include other aspects which may or may not be relevant. The editing process can be used to focus on particular issues at a later point in time. 22. Getting the most out of stories There are several different approaches that you can use once you have collected your stories. It is not always necessary to have every story transcribed. This can be an expensive and time-consuming approach and can actually strip the story of its emotion. Sometimes it is the way that the storyteller talks about something that is more important than what they say. The Royal College of Nursing recommends the use of ‘theming’. This is a process where you listen to the recording of the story and pull out the different issues that are talked about. If you choose to adopt this approach the Royal College of Nursing recommends the following: • Stage 1 – listen to the tape and create a mind map. This is where you listen to the story, pausing and rewinding as necessary, and pull out the different issues and themes that the patient talks about. For example, they may talk about the need to use their buzzer, the way people talked about them, their understanding of what was happening to them – all of which could be themed as ‘communication’. • Stage 2 – peer review. This is where a colleague listens to the tape and creates its own mind map. This provides an opportunity to discuss the different things you hear the patient say and compare view points. • Stage 3 – identification of areas for quality improvement and indicators of good practice. It is important to do both of these, not to simply focus on the negatives. The above is just one example out of many different approaches that are also available. 23. Storing Stories This will depend very much on the consent that you gained at the start of the process. If you said that you will

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destroy the recorded stories after you have gathered your information you must do this. You may include within your consent process a request for permission to use quotes or parts of the story for other reasons, for example in presentations or training. Make sure you fully think out what you will want to do with the stories before you start. Above all you need to make sure that you do something with the information that you gather. This does not have to be huge service improvements, sometimes small steps provide you with the biggest results. 24. Doing something afterwards It is essential that you do something with the information that you gather. It is unethical to take someone’s story and then do nothing with it. Some people quote the reason for not involving patients in improvement work as being that patients ask for changes that are either impossible or too costly. This is not the case. The majority of patients want the Health Board to provide quality services and will be very pragmatic in their suggestions for improvements. It may not be practical to tackle all of the issues that are revealed and this is completely acceptable, but only if you have fully considered all of the options and have good reasons for your decisions. A fair few of the improvements that you identify may well be small changes; they may even be ones that do not cost anything. It could be around change in attitude or practice that could be built into every day working. It is sometimes the smallest changes that make the biggest differences. It is not acceptable to argue that patients do not understand what it is like to work within the Health Board. We do not always understand what it is like to be a patient receiving the services we provide. This is a two sided relationship and the best solutions work with both of them in mind. After you have gathered the information, it is worth developing an action plan for tackling the improvements that you have identified. This can be shared with others

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and used for tracking your progress. You may well find that many of the improvements can be tied in with work already in progress within your organisation. For example, if an issue comes up about food, you may want to direct that via your organisation’s nutrition working group, rather than tackle it in parallel.

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Appendix 1–Quick Decision guide for Patient Stories

• How will using Patient Stories benefit my service

improvement?

• Do I know exactly why I want to take patient stories,

and what is the clear purpose?

• Have I discussed my plan to take patient stories with

everyone that needs to know?

• Who is going to take the stories?

• Can I maximise my learning by applying the story to

other uses?

• Do I need training before I start taking stories?

• Have I thoroughly planned my approach?

• Have I made the use of the stories clear in the

consent information provided?

• Have I thought about how I might react to what

patients will say?

• Have I sought the support and guidance from the

Health Board?

• Have I decided how I will collect the stories?

• Have I identified when the best time will be for the

patients involved to tell their story?

• Have I got appropriate facilities where I can take the

stories?

• Am I certain that I will only use the stories in a way

that the patient has agreed to?

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• Can I guarantee that something will be done with the

stories after they have been taken?

• Have I got the consent process right?

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Appendix 2 – Sample 1 Consent Form for Patient Stories Cwm Taf LHB has adopted a system to give you the opportunity to tell us about your experience of healthcare in your own words. The aim is to give us an understanding of what it is like as a patient, what was good, what was bad and what would have made your experience more positive. This form is to give agreement as a patient, to telling your story. I have been given an information sheet explaining the reasons why you are interested in my story and how my story will be used. I have read it and believe that it has been fully explained to me. I have been able to ask questions about the things that I do not understand and believe that they have been answered to my satisfaction. I understand that I am under no obligation to tell my story and that I have the right to change my mind at any time, including after I have signed this form, without having to give a reason. I understand that telling my story will not affect any current or future treatment and care that I may need. I understand that my story will be treated in confidence and that my personal details will be completely anonymised when used within the Health Board unless I state otherwise. If any issues are identified as part of this work that cause concerns for patient safety, I understand that they will need to be looked at by the organisation. I freely agree to tell my story.

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Signature ………………………………………… Date …………… Name in block capitals ……………………………………………… Signed (interviewer) ……………………………………………………

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Consent to Digital Imaging/Digital Recording for Patient Stories I understand that the photographs (digital imaging) or digital Recording requested here, to which I have agreed, will form part of my patient story and, in view of the explanation given to me, I agree that these may be shown as part of my patient story to appropriate professional staff( i.e. teaching purposes). Your patient story will not be filed on your medical records. Signature of Storyteller ………………………………………… Date …………… Signature of person taking consent: ……………………………………………… Job Title: …………………………………………. Date: ………………………………………………. All information gathered through patient stories will be kept for a period of five years. They will be stored in a secure environment and will be safely destroyed after this period.

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