Sydney Local Health District (SLHD) are in the midst of their Innovation Week 2018. They chose to kick off the week with a Patient and Family Symposium, highlighting the importance of keeping patients and their families as the focus for their activities.
Given our interest in patient engagement, we took ourselves along to hear the perspectives shared. While research was not a specific topic on the day, we were pleased to see both patients and staff raising the desire for more patient involvement in research.
As we sat down to review some of the observations and insights of the day , we thought we may as well share what we learned with our community who may not have had the opportunity to be in the room. So here goes…
Julie McCrossin, MC and Patient
- As a survivor of head and neck cancer, Julie expertly balanced her role as MC and questioner, with sharing her own patient experiences throughout the day.
- Clinicians get desensitised to what is normal for the average person. That can lead to very traumatic experiences for patients.
- The language clinicians use matters. Julie talked of the the trauma of the ‘immobilisation’ mask used in her radiation therapy. Using the words ‘safety mask’ instead of ‘immobilisation’ mask could have helped in managing how she felt about the mask.
- Don’t assume the patient has been informed. In Julie’s case, everyone thought someone else had briefed her about the mask, which added to her distress upon being introduced to it.
- There is much we can learn from how healthcare strives to make the experience better for paediatric patients that could be applied to care of adults. Look to your paediatric colleagues for inspiration. Two examples were shared:
- A UK group created a 1:6 model of the radiotherapy room and mask for paediatric patients to help demystify what will happen during the treatment.
- A ‘magic string’ can be used to connect paediatric patients undergoing therapy to carers outside the radiotherapy room to make them feel a little less alone. A tug of the string enables a form of communication between them.
- Why not use tools like these to also provide comfort to adults undergoing radiotherapy?
- Improving the patient experience doesn’t have to cost alot of money – take for example the ‘magic string’.
- Being empathetic for a patient is not enough. We need to move to active partnership with patients and make change for entire groups of patients.
- Good resources that are created by patient groups for patients, should be made available alongside other resources for patients. As an example, Julie mentioned the head and neck cancer support resource she and other patients had produced was being displayed alongside the Cancer Council information at a St George Hospital clinic, because someone with the authority “made it happen”.
Dr Teresa Anderson, CE SLHD
- We (as healthcare providers) don’t know what we don’t know. That’s why its important to keep talking with patients and sharing ideas.
- SLHD launched the ‘Partners in Care‘ Policy, recognising the important role of family, friends and advocates in patient care. Flexible visiting hours are just one example of this in action. But being mindful of families doesn’t just stop with visiting hours. For example, SLHD have installed webcams in the nursery ward, so parents and families can connect with hospitalised babies when they are not there.
Dr Teresa Anderson, CEO SLHD & Dr Genevieve Wallace Acting GM, Concord Hospital
- There is much to learn from Disneyland in how to exceptionalise customer service. The physical environment, staff and processes are all key.
- The detail in the physical environment matters. While it may not be directly noticed by visitors, a good environment will help build staff pride in the workplace.
- Select staff that demonstrate the values and behaviours that you want – don’t just fill spots. Set clear expectations of what staff should be doing and the behaviours expected right from the time of recruiting, and be firm on those, but also anticipate staff needs in advance and support them to be their best and behave as you expect.
- Take a deliberate approach to preempting and minimising patient frustrations, and build processes to support that.
Michael Morris – Samuel Morris Foundation
- Michael shared his personal family story and his thoughts on leadership.
- Some powerful questions…
- What would you do if you knew….? What could you do differently/change today as a result?
- How does your clinical decision (for this patient) affect all the other specialties/colleagues/parts of this patient’s life?
- Leadership is not just about the title, is about actions. Michael’s ECLIPSE framework provides a useful compass.
- E = Ethics: It’s about just being a good person. Michael sets high standards for himself, and expects the same from those he works with.
- C = Courage & Compassion: Having the courage to never shirk away from what is not right, needs fixing, but having compassion in how you deal with others. You never know what else might be going on in a person’s life.
- L = Life experience and Limitations: Everyone brings something to the table and it is our responsibility to unpack how they can add value. If someone has limitations, are they limitations that need to be respected, or challenged?
- I = Information: Share broadly what you are allowed to, and explain the reasons if something cannot be shared. Knowledge is power, but knowledged shared is far more powerful.
- P = Passion and Perspectives: Wherever you are in life, you come across people with a passion for something. How can you tap into that passion, unlock that excitement and bring new perspectives to the table?
- S = Support: How can I support the people I work with, and how can I elicit their support in times of my own need? It’s about being a decent human being.
- E = Energy: Individuals don’t have energy, but teams do. Sometimes you will ask for 110% effort from a team, but you also need to respect teams need downtime and you need to know when to back off.
- The image of an Eclipse is a reminder that when something shines brightly, it casts a shadow. It is easy to look at what is in the spotlight, but we need to make sure not to miss what might be happening in the shadows.
- We achieve change one conversation at a time, one interaction at a time. If you don’t make an impact today, try again tomorrow by asking the question in a different way, looking at the problem from a different perspective until you do make change.
Prof Phil Harris, Clinical Director, Cardiovascular Services, and Laila Hallam, Patient Experience Manager and Consumer
- Disney and hospitals have something in common – they are both guiding people through an emotional experience.
- With as many as 30% of cardiology patients experiencing depression a year after discharge, we need to think about how better to support people post-hospitalisation. They’ve been working on ‘A Passport Home’ initiative to help transition people from hospital to home.
- Laila interviewed many patients in an effort to collect and produce a booklet of FAQs that patients might like to ask their doctors whilst in hospital. The feedback challenged many of the assumptions she held as a health consumer about other patients.
- Some insights:
- Patients have questions, BUT are reluctant to ask them. Per one patient’s feedback: “There is a protocol. Doctors are busy, so you know you are only supposed to ask them one question”.
- Patients vary alot in their dependence level. Some want to share information with anyone that will listen and be involved in shared decision-making. Others still rely heavily on the opinion of the doctor.
- Patients will pick up questions (such as from the questions booklet) when they are ready to. That may not happen within the timeframe of being in hospital. This is something that needs to be considered when consenting people, especially in research.
- Clinicians need to be sensitive to the type of patient before them and the type of relationship they want in their care.
- Patients are more likely to share and ask questions with someone who sits down to talk to them, rather than the person standing at the end of the bed asking.
- We need to think about how we give patients the permission to ask, and the time to ask their questions. With many occasions where doctors might visit a room in ward rounds, where a patient is talked about in plain sight and feels they aren’t supposed to engage, how are they to know when it is OK to ask questions?
- Staff need to recognise there is a power imbalance between patients and staff/clinicians. Per a patient: “My future is in their hands”.
- Family are a big part of a patient’s recovery. Not everyone has family, so making sure those without are catered to in important.
- Food only becomes important to patients in hospital when it has ramifications for their recovery.
- Clinicians need to understand a patient’s social and cultural context.
- For those approaching people to be involved in research, case studies, consider and ask the patient “Is this a good day to have this conversation?”
Adam Wells, Transplant recipient and Dr Lissa Spencer, Clinical Specialist Physiotherapist
- Adam shared his journey of being diagnosed and living with sarcoidosis, then of having a double lung transplant last year that gave him new life, and the role of his clinicians in keeping him alive. Gratitude was shown to the organ donor that made it possible.
- To be an organ donor, ticking the box on your drivers license isn’t enough. You need to do 2 things:
- Talk to your family/friends and let them know of your wishes, so there is no doubt should the choice need to be made that you wanted to donate your organs;
- Register your wishes on the Donate Life website.
- Adam plans to trek the Kokoda Track next year as both a personal goal, some man-time which he missed out on being ill, and to raise awareness for organ transplantation. His ongoing partnership with his clinicians is crucial to prepare him physically for this. The development of his elite exercise program is an example of understanding the needs of the patient and clinicians working with patients to meet those needs.
- Adam and Lissa’s discussion demonstrated the positive impact that both a motivated patient and engaged clinician can have both on each other, and the patients and clinicians around them.
- Learn more about Adam’s Kokoda Trek and mission on his website.
Kelly Foran, CEO Friendly Faces
- Kelly shared her extraordinary personal family stories that saw her experience 7 hospitals in 2 states over a number of years and led her to start Friendly Faces, a helping hand for country patients trying to navigate their health journeys.
- We are not defined by what happens to us, but by how we respond to what happens to us.
- Hard work and persistence can achieve great things. Every patient/carer who presented is just one person that had something happened to them, and is now making a difference.
The Symposium was a day full of honesty, stories, a few tears, constructive discourse and hope for what might be possible if patients and health care providers work together. To paraphrase an attendee from Adelaide… This event was different because unlike most similar events, it wasn’t just a day opened by a patient story, that then went on to more operational presentations – it was all patient stories and positive examples of partnership.
We’d like to commend and congratulate SLHD on this event, and encourage other health and research institutions to consider running similar events. And, if you are reading this, please consider learning more about and supporting the activities of the patients and carers that spoke by visiting their various websites. They are making a real difference to the lives of others.