Dr Sarah Russell, Head of Research at Hospice UK, writes about the Outcome Assessment and Complexity Collaborative (OACC) and the recent workshop that illustrated how it is being implemented in hospice care.
What is the care that matters most to people and their families at the end of life? For example, is it the control of their pain, breathlessness and fatigue, the opportunity to discuss worries, find out the information that they need or to achieve just one more personal goal before they die?
A drawer full of ‘thank you’ letters is commonplace in hospice care, but it is not enough. We also need to know if the care that we give is what the person and their family wanted. Was it the most appropriate care possible and how did it a make a positive difference to their lives?
This is where outcome measures come in. Using outcome measures in everyday practice enhances what we do. It is more than a tick box exercise or the reporting of clinical activity. Outcome measures give us information that can be used immediately at the bedside, in the team meeting and strategic service planning. Studies tell us that collecting patient and family outcomes routinely, using a set of standard assessment tools means that care processes improve leading to improved symptom identification and better communication, and provide a consistent clinical picture of each patient. An outcome measure captures ‘change in health status’ as a consequence of health care or interventions. An outcome measure enables consistent discussion, assessment, delivery and evaluation of care for patients and their families.
In the UK, the Outcome Assessment and Complexity Collaborative (OACC) suite of measures is a way that we do this. These particularly include Phase of Illness (describes the distinct stage in the patient’s illness), Australia-modified Karnofsky Performance Scale (assess overall performance status in three dimensions) and Integrated Palliative care Outcome Scale (measure of global symptom burden which includes items that measure physical, psychosocial, social and spiritual domains). See here for a brief summary of these measures.
Over the last three years and in collaboration with the academic centres of excellence; Cicely Saunders Institute (King’s College London) , the Wolfson Palliative Care Research Centre (Hull and York Medical School), and Hospice UK have been working hard to support the hospice and palliative care sector in the use of outcome measures.
Part of the Head of Research role at Hospice UK has been to lead, deliver and evaluate our outcomes activities. This has been done in collaboration with Professor Fliss Murtagh (Wolfson Palliative Care Research Centre), Marsha Dawkins (Clinical Research Fellow, Cicely Saunders Institute), Susanne de Wolf (previously Quality Improvement Facilitator, Cicely Saunders Institute) and the wider Hospice UK team. This has predominantly taken the form of education events, ongoing advice and the Research and Outcomes Community of Practice.
For example, in 2015/16 over 90 per cent of the hospices across the UK purchased the OACC suite of measures resources pack. In 2016/17, nine national ‘Train the Trainer’ workshops on the implementation and use of the OACC measures in their settings were attended by 214 practitioners. In 2017-18, 146 people attended three OACC Community of Practice events at the Cicely Saunders Institute (London), St Luke’s Hospice (Sheffield) and Accord Hospice (Scotland).
Furthermore, there are over 200 members of the Hospice UK Research and Outcomes Community of Practice (link here), with a monthly newsletter including ‘Ask the Expert’ questions, resources and discussion on the Hospice IQ forum as well as Community of Practice events every year.
Hospices are also increasingly sharing their OACC experiences in peer reviewed journals, national and international conferences. For example, BMJ Supportive and Palliative Care (an official journal of Hospice UK) hosts on their website the annual Hospice UK Conference supplement which lists all the accepted posters and oral presentations. This includes OACC related submissions. For example, you can see the 2017 supplement here (also look at the previous years). The Community of Practice Resource forum holds a list of useful webinars, videos, references and publications related to OACC and outcomes evidence. Over 20 of the citations relate to hospice and palliative care services sharing their OACC activity.
Meanwhile, the Cicely Saunders Institute and the Wolfson Palliative Care Research Centre continue to drive the international evidence base for outcome measures from tools, measures, dissemination to implementation science: ensuring that all we do is based upon robust, credible and reliable research. In other words, real world practice and cutting-edge research is working in tandem together to deliver the best possible care.
Community of Practice workshop
The significance of using outcomes was illustrated in the recent Community of Practice event hosted by Accord Hospice in Scotland. Helen Simpson, CEO at Accord Hospice reminded me of how important it is to see the relationship between ‘data and the rich lived experience of palliative care.’
The OACC Community of Practice events have a common theme. Co-delivered by myself, Professor Fliss Murtagh and Marsha Dawkins, their objectives are:
- To be informed of the activity and outputs of the Outcomes Community of Practice
- To be provided with the latest evidence on outcome measurement in palliative care and the theory and evidence of implementation.
- To network and share with others using or planning to use outcome measures.
Part of the programme design includes focussed discussion, problem solving, information and most importantly sharing together what OACC activity hospices are involved in. Real world practice is key to the programme design.
For example; Liz Smith and Audra Cook from Prince and Princess of Wales Hospice described how they were using Phase of Illness, Australia-modified Karnofsky Performance Scale and Integrated Palliative care Outcome Scale in their In-Patient Unit, Community, Outpatients and Day Services. What was particularly striking in their presentation was how they consistently incorporated staff feed back and audit into their planning and implementation of their measures so that they could continuously improve.
Paul Bett, Data Analyst, Accountable Officer and Carol Pyper, In Patient Unit Ward Sister at Ardgowan Hospice shared how they were using (and displaying) Integrated Palliative care Outcome Scale data on an individual patient basis for discussion at multi-disciplinary team meetings, and to help demonstrate improvement (and/or deterioration) over time for a larger cohort of patients. What was interesting in their work was the effectiveness of the clinical and data team interaction to make data meaningful and the different ways that data could be displayed (e.g. for a variety of audiences).
Dr Lindsay McNeil, Consultant at Accord Hospice provided an honest and powerful account of how they had implemented the OACC measures reminding us of how ‘IPOS usefully ‘opens up’ the conversation with patients.’ All three real world practice examples illustrated the power of collecting and using outcomes data to plan and deliver care and how combining data with patient stories provides a convincing narrative of hospice care.
Perhaps some of the most valuable activity from the day was how it was ‘good to share and learn together’ (delegate) and learn about ‘the real world bits’ (delegate). Learning and sharing together through the events and Community of Practice enables a forum where outcome measures can be used in every day practice.
Why does this matter? It matters because everyone deserves the best possible care, delivered in the best possible way, based upon the best possible evidence.
To find out more, download resources or to join the Research and Outcomes Community of Practice please click here.