Somewhat ironically, my presentation concerned the need for culture change to embrace PPI in the quality improvement agenda. I focused on two key points: legislation now requires that NHS organisations actively consider appropriate methods of patient involvement, but without culture change meaningful involvement would be difficult.
Unfortunately, on the whole, the audience was passively but politely disinterested, and some showed a greater degree of antipathy. One would hope patient-centred care, and assessment of that care, would naturally be high on a junior doctor’s agenda, and that the new legislation would only boost that. Even if these priorities sometimes get lost in a very busy junior doctor’s working life, there are a great many professional benefits for them from proactive, successful PPI and my co-presenter –HQIP’s PPI Lead Kim Rezel – made great play of these, making the reaction from the audience all the more surprising.
I am tempted to say it seems to me many junior doctors still see patients as a vehicle to their own ends; their learning, their accreditation, their career development. That is too simplistic, but opportunities such as the conference are rare and all of us – patients, clinicians, audit professionals – need to grab them with both hands.
We must also learn from our experiences and Kim and I agreed that we could have made the presentation more interactive and asked the audience questions about their clinical audit projects and explored where patient’s may have been able to contribute and how that could have benefited their projects. It is important for us to remember our audience and change our approach accordingly.
Good clinical audit means good clinician input backed by good PPI. There are no magic bullets, but this is not difficult – it just needs some commitment and a little time. I know anecdotally from those junior doctors, who have fully embraced this approach; the rewards are well worth it.
I would urge junior doctors reading this to grasp the nettle – there is a huge amount of support available, and the results, ultimately, are a win-win for all concerned.
Service user network representatives Martin, Jagadish, Mike and myself took part in some lively discussions, conversation and meetings, not forgetting the networking which we enjoyed, we felt that we had a voice, as service users representatives were definitely fully engaged being listened to and involved in every aspect of the conference.
There was a full and diverse programme, stands/displays, local audit marketplace run by teams involved in running HQIP clinical audits and clinical outcome review programs who were more than happy to answer questions.
NCAPOP Awards voting took place throughout the conference . The categories were (1) Partnership working with patients and service users (2) Partnership working with professional stakeholders (3) Innovative dissemination (4) Creating conditions for local improvement. This included an awards ceremony where the results of the votes were announced. All the entrants were excellent with vast amounts of work undertaken. Networking was a key theme for us, SUN representatives supported Ann in her Public & Patient Involvement awards workshop.
We all attended a number of workshops on both days of the conference. The four I attended covered NICE and national clinical audit; a practical look at QI techniques and one about tools to engage your audience in audit training.
The keynote speakers and workshop facilitors encouraged full participation from all delegates, so we were fully engaged in the process.
At the end of each day there was a Panel debate for delegates to ask questions and clarify topics. This was chaired by Roy Lilley, NHS writer, broadcaster and commentator. These were thought provoking debates.
As I'm writing this blog I keep reflecting on the number of topics covered and the key themes.
We as service users and part of HQIP's SUN were pleased to be so fully involved in this conference.
Thank you to Kim Rezel Patient Involvement Lead and Development officer for supporting us throughout the conference.
The workshops I attended; Quality frameworks and Influencing clinicians were both well attended and very informative.
I would like to thank the staff at HQIP for all their hard work put into the conference, the speakers were great, each in their own style. On the feedback form it asks how can we improve, Im not sure you can, well done to you all.
I have to agree with Dave the networking was fabulous and we have all shared ideas and picked up some new ones.
Ann Heaton, SUN member
Dave Brown Lay Representative at WWL
By: Nikhil, Service User Network member
It must be recognised that ‘outcomes' are the only reasons for health and social care to exist. This is because every intervention and service is designed to achieve an outcome. These outcomes - whether it is recovering from a medical condition, improving quality of life, or something else - are the only reasons why patients and their carers permit and encourage interventions. It follows, therefore, that identifying and implementing the most desirable outcomes is one of the key priorities for researchers, the NHS and beyond.
One patient, many outcomes
As a patient, I often share clinicians' desires to have robust clinical outcomes. After all, improvement in health - or a cure of illness - may be considered the most important outcome. However, improvement in health is an inherently vague notion and is often defined by competing interests between patients, family, industry, physicians, researchers and commissioners.
Moreover, improvement in health is only one type of outcome. Outcomes also have to be developed in terms of side-effects, safety, etc. Furthermore, greater focus has to be given to wider non-clinical outcomes, particularly in quality of life of the patient and their carers/family.
With such a wide range of possible outcomes, the need for core outcome sets becomes evident. If all the different parties involved in healthcare focus on different outcomes, or simply report the same outcome using different (or inadequate) methods, it becomes impracticable to interpret and compare outcomes. Indeed, if only outcomes which are less relevant to the needs of patients are investigated and reported, quality of healthcare cannot improve to the extent patients deserve and need.
Aiming for outcomes agreement: feedback from COMET
Last month I was fortunate to be selected as a Public Facilitator to the COMET III meeting, the third international conference of the COMET (Core Outcome Measures in Effectiveness Trials) initiative. This initiative is a project which, firstly, seeks to assist researchers to develop core outcome measures, and, secondly, provides an online database of all known core outcome sets.
The entire process of being involved with COMET was a pleasurable one. The application process was pleasant: COMET had employed a dedicated PPI Coordinator, whose understanding was augmented by her personal experience of being a carer.
After having been selected, I contributed to developing a PPI poster for the conference. I was also a facilitator for the PPI workshop, which was attended by researchers and made a short presentation on why involving patients and carers is so important.
COMET: delivering true patient focus
Having expected there to be little talk of patients outside the PPI workshop, what struck me the most was the sheer number of times the word ‘patient' was used by the main speakers. Not one speaker failed to mention the importance of outcomes to patients. More importantly, everyone recognised the need to have patients as partners in developing and agreeing core outcome sets.
Normally, I have dozens of suggestions to make to health researchers. But with so much meaningful emphasis on PPP, to the COMET organisers I had only one: researchers need more support to be able to involve patients/carers actively. PPP is not an easy task, and effective PPP requires skills, resources and a real commitment to improvement. Sadly, good PPP requires time and money - so I do hope commissioners and funding bodies are reading this!
Though the COMET Initiative has been around for a few years, I am confident that it will achieve even more. And I am sure that the team will build on their fantastic work with patients, carers and the public.
Learn more about COMET: www.comet-initiative.org
5 July 2013: User-led audit case study
Please have a look at the case study that showcases the work that we have been doing in WWL. I presented the findings of the audit of the urology service to the June audit meeting in our trust. Whilst the audit itself was completed in January 2013, we had follow up discussions with the surgeon in charge of Urology to discuss our findings and the actions that could be taken. The audit was intended to find ways the service could be improved as it prepared to move into upgraded premises at the Leigh site.
As one of the four members of the lay group at the trust (the others being David Brown, Alan Mohring and Alex McMillan) I have been involved in the whole process where we determined the content of the survey and then got replies from 47 patients. We attended the surgeries in person to speak with the patients, but in view of the nature of some of the diagnoses it is understandable that not everyone wished to discuss their feelings about the appointment process.
The audit results showed that clearer guidance in advance of a visit and a review of the timings of appointments booked would enable patients to be ready for procedures and minimise the waiting times and need for repeat visits. There were also requests for evening and weekend clinic dates so that people did not have to give up on days' work.
Overall levels of satisfaction were extremely high and people were willing to recommend the service to their family and friends, should they ever need it.
There were also some broader messages for the trust in respect of accessibility by public transport to their Leigh site, the congestion in waiting areas and the need to ensure that the method for calling patients at reception took account of hearing and visual difficulties, particularly as this patient group was predominantly over 60 years of age.
Subsequently I was asked to give a resume of the presentation to a broader group of audit lead staff from across the trust and stress that our group of lay representatives are willing and able to assist in any way in the undertaking, analysis and reporting of audits being undertaken by junior doctors and other staff. We feel our strongest contribution comes from the fact that we are fresh pairs of eyes who are not steeped in the culture of the NHS, although we have all had contact with it personally and in our families. This enables us to ask simple questions, the "ifs", "whys" and "so what difference did it make" that pick up on the underlying reasons why clinicians and managers make the proposals that they do.
We enjoyed this initial foray into work with the trust and have been asked to carry out a review audit in September/October in the Urology department - this time we would anticipate asking all the patients so that we get an understanding of the extent to which the service has improved in the last 6 months.
Thanks also go to Margaret Hughes, who got us involved in this at the outset in early 2012, and Liz Farnworth from the Clinical Audit department who has made sure that we have been invited to all departments' audit meetings giving us a clearer insight into the nature and extent of professional self-analysis that does take place in the NHS.
By: Kim Rezel, PPI lead, HQIP
Just a quick note to flag up that Healthwatch has produced a promotional film, see here. I think it looks great and I hope it is able to reach out to a lot of people.
Members of HQIP's Patient Network have varied reports on the progress of their local healthwatch, but everyone is still hopeful and positive about what it will be able to achieve. This video shows what it's view is for the future and I hope it will achieve a wide and diverse membership in all areas.
Keep up to date with Healthwatch news by signing up for their newsletter through their website here www.healthwatch.co.uk
By: Margaret Hughes, HQIP Patient Network
I attended a scoping workshop with NICE last week. It was my first one and I found it very interesting. Everyone made me feel very welcome and my thoughts and ideas were listened to. Indeed, a couple of points were incorporated into the draft guidelines document for further discussions.
NICE is developing guidance related to trauma, with the expected publication date of 2015. There are five different aspects of trauma care under development: complex fractures, fractures, major trauma, spinal injury assessment and trauma services delivery.
They are desperate for patient/carer involvement and all that is needed is some knowledge of the subject being developed. It is important you can give the patient or carer perspective. They have enough professionals involved, but us on the patient side see things differently of course and it is crucial our view is incorporated into these very important guidelines.
The guidelines, when published, will be used to provide the standards by which care is delivered and frequently used in clinical audit and by commissioners. They are very important and we must be involved the opportunity...so don't let it slip by!
All the details are on the NICE website. Please click here for general guidance on how to get involved, click here for spinal injury details and click here for major trauma the deadline is 14 May - not long!Back to top >>
By: Margaret Hughes, HQIP Patient Network
In the light of the Francis Report, which identified that clinical audit was not robust at Mid Staffs, the opportunity has never been greater than now to introduce patient involvement in clinical audit.
I believe that if patients had been properly involved there, as part of the clinical audit ‘every step of the way' approach, the right questions would likely have been asked at the right time.
To any other trust reading this I'd simply remind them that all the information required to get started is on the HQIP website - don't get left behind.
Kim Rezel and I presented recently in Leicester where they had some really interesting examples of patient involvement from the mental health sector. That sector, nationally, are ahead of the game in Patient and Public Involvement anyway, but it was exciting to see that they are moving into Clinical Audit. Hurrah for Leicestershire Partnership NHS Trust.
What is happening where you are?
By: Kim Rezel, PPI lead, HQIP
I was really pleased when I found out that I had a place at the second Healthwatch England (HWE) committee meeting, held in London. I had watched the first meeting live on webcam (http://www.healthwatch.co.uk/news/healthwatch-england-committee-meeting-0) but it was easy to get distracted and lose the thread of the discussion. Saying that, I think the future meetings will now be easier to follow now that I have experienced the context first hand. I recommend you keep an eye on the HWE news bulletin to find out when the next committee meeting is coming to a town near you: http://www.healthwatch.co.uk/get-our-newsletter.
Dr Katherine Rake has been in post as CEO of Healthwatch England for all of six weeks, so I was very impressed with the work that she has already achieved in that time. A business plan has been drafted and presented at the meeting and included the 8 principles of consumer rights. Based on this plan for 2013/14, HWE are initially prioritising four items including:
The committee also discussed the Francis report, specifically looking at the recommendations related to Healthwatch including:
To me it seems that a lot of work is being done to try and meet the 1 April launch of LHW and so far this is being done openly and with wide consultation. The HWE committee put across clearly that their priority for LHW is that they must have "excellent engagement in the community" with specific focus on hard to reach groups.
Fingers crossed to a good start continuing into the new financial year! Before I go, HWE have announced a conference in Birmingham on Wednesday 13 March for chair's and chief executives of LHW. Are you going to attend? If so, please let us have your views and feedback: http://healthwatch.co.uk/news/healthwatch-england-national-conference.
By: Margaret Hughes, HQIP Patient Network
I recently had the pleasure of attending the joint HQIP & Healthcare Conferences 'Clinical Audit for Improvement' 2013 conference in London.
We had the opportunity to hear some of the great movers and shakers in health including Professor Sir Bruce Keogh NHS Medical Director DoH, Niall Dickson CEO General Medical Council and Dr David Scott Chairman, Medical Managers Sub Committee BMA and Clinical Lead for Paediatrics East Sussex Healthcare Trust. All held together by our own CEO Robin Burgess who spoke eloquently on the National Clinical Audit and Patient Outcomes Programme. That was only the first morning! The subjects were all relevant to the rapid changes in the NHS bringing us up to date with happenings across the health economy and particularly what is happening nationally and locally in clinical audit.
Of great interest to me were the two presentations looking at revalidation and clinical audit. I have been involved in the development of revalidation for a number of years with the Royal College of Physicians and now all the work is coming to fruition. This is a good hook for patient and public involvement in clinical audit in trusts as all doctors have to show their involvement in service improvement and show patient feedback. Patient Involvement could tick both boxes. Bingo. HQIP guidelines can show you the way.
The first morning set the tone for the rest of the two day conference. On that first day I was unable to attend a workshop as I was helping Kim deliver a masterclass to a full house on patient and public involvement in clinical audit. I will write about that later.
On day two, I was able to attended a workshop facilitated by Kate Hill, a solicitor, who delivered a legal master class. This was excellent and I would recommend both the facilitator and the content. It was really enlightening to hear how the language used in patient documentation can sometimes be so ill conceived as to be very useful to the prosecuting council in a court room.
One last interesting point, I stayed overnight in London in a great hotel except I had to share my room with the tube line going into Great Portland Street. The price I have to pay for having fun.
By: Kim Rezel, PPI lead, HQIP
The Department of Health has responded to the Francis report, published this week, saying that it is committed to connecting with patients.
One of its next major moves to drive this is the Department's facilitatation of a series of patient-focused workshops to facilitate greater involvement in 'consumer champion' Healthwatch.Back to top >>
By: Kim Rezel, PPI lead, HQIP
A glance at the now published Francis report, shows the importance of patient groups , highlighting the failings of LINks and the need for patients, families and carers to raise serious issues and fatal problems with the Mid Staffs Trust. We hope this report and Healthwatch will enable good processes in place for future patients and public to voice their concerns. Last week saw the first Patient Network meeting of 2013, it was a packed agenda, where we welcomed four new members, discussed new HQIP work and speculated about the Francis report.
The Department of Health have also published a response to the inquiry committing to reconnecting with patients.
The Diabetes UK blog has come to an end now that they have completed their patient-friendly clinical audit report found here: Diabetes UK Patient summary. Read their blog to follow the process they undertook: Diabetes UK blog.
The NJR have also published 2012’s patient-friendly report – found here.
Please make sure you have a look, especially at the new interactive version, I find this a really easy way of reading a document on a monitor and much more environmentally friendly! I’d really like to hear your feedback about this, so please email me your views.
Both reports were achieved with high-level patient involvement, it will be interesting to hear your comments about their accessibility and readability. Some of the Patient Network members, with their other hats on, were involved in their development and welcomed the approach and said that they felt very involved in the whole process. It is key that all clinical audit reports are also published in a “patient-friendly” way, and in order to achieve that it seems obvious to me, you must involve the patients! Please have a look at our guide on some suggestions on how to develop a patient-friendly clinical audit report.
Next week HQIP are holding their annual conference at the Hallam Centre in London. Members of the Patient Network and myself will be presenting and facilitating a masterclass in involving patients in clinical audit.
I'll let you know how it goes!
18 January 2013: Patient and consumer involvement in audit
By: Robin Burgess, CEO, HQIP
This week has seen a range of patient related issues come into the spotlight. We are preparing for our annual review of our accreditation for the Information Standard, which reviews the information we publish for and about patients. We have a lot of great work this year to talk about which we think have improved the level of reporting of audit findings to patients and consumers. Notable within this is the guidance on developing a patient audit report at the national level. Whilst some audits have done this for years, including the National Joint Registry in the last couple, it is pleasing to see other national audits also producing similar reports - and writing in to thank us for the guidance and how much it helped them produce their own. We want to see, over time, one produced for every audit.
On a related theme, just to remind everyone of our continuing work to ensure all audit reports are published on data.gov at the lowest level of granularity as soon as can be organised. This project, part of the Transparency and Open Government work, continues apace.
Don't forget as well that the announcement in the Commissioning Board Planning Guidance (pdf), to publish surgeon level data by this summer, has speeded this work up in the case of certain audits. This piece of work is also moving on rapidly, getting surgical community buy-in to make this happen. A joint meeting, co-hosted with the Royal College of Surgeons, with the affected societies and Sir Bruce Keogh attending, is booked for the 4th February. When these data are published it will be a big boost to the volume of data available to patients. As well as involving patients, we have to provide them with access to audit findings in an easy to access and understandable fashion: it's a priority for us.
Patient consent issues are also crucial. I attended a useful review meeting hosted by the Health Research Authority this week looking for ideas on how the Section 251 exemption from patient consent that applies to national audits and research could be developed - they now have responsibility. Of course Section 251 should only be applied where patients cannot consent - where they can they should. The Caldicott commission will have something to say about this too, when it reports later this year. The key issue that emerged is that researchers and research departments at the local and academic level, need more education about why patient consent rules exist, their value, and why exemption should be avoided. However, if required, the processes needed to obtain it need to be rigorous and robust. Still, it seems to be the case that some in the research community see such necessary controls and constraints on use of unconsented patient data as just a chore. This has to change, so whilst the procedures to obtain exemption need to be efficient, researchers accept why they are in place and how important they are.
HQIP has patient and consumer interests in its DNA, and we will continue to stress the importance of patient and user involvement in health, and to come, social care audit processes. Notwithstanding the range of work to engage patients in governance and practice, and to direct data and evidence from audit to patient audiences, there is still a long way to go. CASC's annual survey of some of those primarily active in clinical audit in local trusts has recently highlighted the need to improve local participation of patients in audit; in their new 2012 report ‘59% rated patient involvement in clinical audit as ‘poor', 35% ‘average' and 6% as ‘good' (http://www.clinicalauditsupport.com/download/DraftCASCsurvey2012.pdf). This is a highly critical self-assessment of practice at the local level.
The examples and guidance on our website are here to help people address this - locally and nationally. We all know how challenging PPI is; but it has to happen.
To join the Patient Network, or for more information on any other aspect of HQIP's work for patient and service user participation: