Croakey is closed for summer holidays and will resume publishing in the week of 18 January 2021. In the meantime, we are re-publishing some of our top articles from 2020.
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Every week, a different guest tweeter takes charge of Croakey’s rotated, curated Twitter account, @WePublicHealth, and uses the account to cover specific health issues or events.
During the week of 27 July, Susan Biggar – @susanbbiggar – covered the importance of patient-centred care and patient engagement, especially during the pandemic, and also shared some of her own family’s story and a stack of useful reading and resources.
Susan Biggar tweets:
Most patients/families haven’t thought about patient-centred care before a major health event. Patient-centred care was unknown to me until 1996-98 when our first two beautiful sons were diagnosed with cystic fibrosis.
When healthcare becomes life and death, having a voice in what happens becomes non-negotiable.
Early days after life-changing diagnosis are critically important for patients and families. Our compassionate GP looked me in the eye as I cried and made it clear his door would be open – and to trust my judgement and worries as a mother. That’s patient-centred care.
We may not be able to define it, but the fundamental principles are there. Best way to find out what it means is to ask – What matters to you? What do you need?
Respect and dignity in healthcare is essential especially during COVID-19. Clearly it’s challenging with the limitations.
But we cannot forget the patient voice – engagement with consumer and patient voices is a ‘must have’ during a health crisis.
Click this link to watch the video above.
Sitting versus standing – does it matter? There’s evidence that when a clinician sits with patients and families, we think their communication skills are better and we’re happier with the care. It doesn’t have to take longer.
According to my son, if his doctor puts the phone away and releases the door handle, it’s a great sign. Ready to have a conversation! Patients know when someone is serious about listening. So much better if that doctor opens the conversation with #HelloMyNameIs
Speak my language
What patients and families are told has an enormous impact on patient experience.
Do you know how much and what type of information your patients/families want to receive? Please ask us. Do you write your appointment summary letter to the patient and CC the doctor? That’s information we all need to see.
Living in Paris in the 1990s with two young children with cystic fibrosis. French comprehension skills still iffy. A week after first hospital appointment, we received the full appointment summary letter. In French, but I had a dictionary! Small to you, big to me.
In the 90s when living in France, no siblings were allowed on the wards. Might not seem so bad until your one-year-old spends a month there and can’t see his four-year-old brother. Who makes the rules where you work? Are patients and families involved?
Some years later, my teenage son tells me after three days in hospital – “I haven’t seen a doctor yet”.
“Of course you have!” I said.
Of course, he had. But not all patients know what these are – ‘registrar’, ‘resident’, ‘consultant’, ‘attending’… Please speak my language.
See the article mentioned above here.
Asymmetry of information is huge in healthcare, probably never more obvious than in COVID-19. Yes, the pandemic is making it harder. But patients and families need information. It’s very tough to engage when you’re so in the dark.
We need patients and families to engage in their health during COVID – inviting questions from us is an excellent way to do it.
Patient-centred care matters now. This means putting the patient in the middle of care. Starting with information.
At the Royal Children’s Hospital Melbourne, with nursing staff, we used whiteboard in teenager’s room for all key information, eg: When is X-ray? Physio? Parents coming back? Brought centre of care and control back to patient. Then teens engage.
The World Health Organization Constitution defines ‘…the highest attainable standard of health as a fundamental right of every human being.’ The ability to actively participate in our healthcare must follow. Patients want it. Families want it. Health professionals want it. But are we there yet?
From a 36-yr-old patient: “After 18 months of chronic foot pain, I saw a rheumatologist. Felt dismissed, told to lose weight. Two-plus years of pain until another doctor listened and diagnosed psoriatic arthritis. I now have a management plan and a better quality of life.”
Diagnosis is a partner sport.
Prof Kim Oates says: “In a safe healthcare system, every patient has a right to be an equal partner in their care.” Great article by Kim on World Patient Safety Day Sept ’19. Relevant today!
Participating in care makes all the difference to patients and families. Rode with ambos taking my aged dad with dementia. Arriving at Emergency Department, not sure if I’m welcome (pre-pandemic, but still?). Ambo response: ‘Of course – we need you and he needs you to get the best care.’
Scariest day of our family’s life, 2002, Medical Emergency Team call for our four-year-old son struggling to breathe. Calm, compassionate nurse at the Royal Children’s Hospital Melbourne managed to involve, respect, inform us. Our son was okay, and so were we. Families never forget compassion.
Collaboration is often the lost cousin of patient-centred care. But it’s essential. Patients and families want to give back, improve, change systems, help avoid future mistakes. Working together, care is safer.
My own experiences (good/bad) motivated me to advocate for system changes.
Is someone wearing the patient/family hat around your decision-making tables? Just like surgeons don’t represent the nursing view; independent patient and family voice needs to be there. Especially, ESPECIALLY in COVID-19.
Read The Guardian article.
More recommended reading
Engaged patients and families leads to safer care and decisions that respect the patient/family priorities and wishes. It’s worth the effort. For all of us.
Yes, we’re in a pandemic. Yes, things are happening fast, hospitals are making fast and tough decisions. But we must involve the patient voice. There are ways for families to be involved in decisions (phone!) or to say goodbye (in PPE, tablets, etc). Some are already doing it.
Read the essay mentioned above here.
Read the article mentioned above here.
Access the podcast via this tweet.
Patient advocates often ‘become’ one because of great experiences in healthcare. My family has had amazing health professionals while living across six countries. Our sons with cystic fibrosis are living healthy, full lives. We are grateful.
Some patient advocates like @MartinBromiley come to advocacy through harm in healthcare. They take that experience and their unique skills to have an impact across health – in human factors in Martin’s case. Are patient advocates improving care for everyone at your health service?
Patient advocates like @CHemmelgarnMS make patient safety real. Having lived through medical harm, they bring a perspective often absent at decision-making tables. It must be there, for a safer future. Where is the patient voice in the pandemic? Let’s all work together to embed it.
‘The Covid-19 pandemic saw statutory policy commitments to patient and public involvement and shared decision making in health systems abandoned.’ Time for that to change says BMJ.
Power and partnerships
But we are not there yet. Where there’s involvement, there’s rarely power. How do we fix this? (A promise to learn, A commitment to act, from the National Advisory Group on the Safety of Patients in England.)
Don Berwick’s #8 recommendation on mid-staffs scandal: “All organisations should seek out the patient and carer voice as an essential asset in monitoring the safety and quality of care.”
Is it happening where you work? An inexpensive, powerful and underutilised tool (A promise to learn, A commitment to act, from the National Advisory Group on the Safety of Patients in England.)
“While we are charged with protecting our patients, families, and providers…remember that our patients have family and friends. They are not visitors. They are allies for safe and quality care…connections to their community, a link to reality.’ Terry Griffin Neonatal NP @IPFCC
How are our consumer/patient advocates helping to inform the difficult decisions about visitation and access being made in COVID-19? Are Consumer Advisory Councils/Committees (CACs) meeting? Is the patient voice engaged still? It is important for all of us.
“The key is to involved people as partners and as equals.” Looking for ideas and inspiration that move beyond tick-box approaches to patient/family engagement? Excellent, short interview with UK patient leader and advocate, David Gilbert from August ’19.
Experienced patients and families have knowledge and insight that contributes to safe care. We had a dad on our advisory council who had lived for 11 months in hospital, been through many departments, knew what worked and didn’t. Wanted to give back.
Focusing on what we know already re patient experience and applying it to our COVID-19 crisis. “Patient experience leaders have developed strategies for successful adaptation in four key areas: communication, care access and coordination, responsiveness, and teaming’. NEJM Catalyst article.
Read the article mentioned above here.
Community Advisory Committees and other advisory groups can review documents, policies & give a ‘tick’ of approval to projects… BUT they can do so much more if they’re involved early as trusted and engaged partners. Viewing them as just ‘tick-box’ is major barrier to progress.
See the guidelines here.
Listen to lived experience
Other public health matters
Read more here.
Read more here.
Susan Biggar is the National Engagement Advisor at the Australian Health Practitioner Regulation Agency, working to improve the experience of health practitioners and the public. With an extensive history in consumer health, Susan has led projects such as the development of a consumer engagement framework for the College of Physicians and trained 4000+ health professionals in patient centred care. She has served for over 15 years as a consumer representative across a range of organisations including the Royal Children’s Hospital, DHHS, Cochrane and the Australian Medical Council. A writer by background, with degrees from Duke and Stanford universities, Susan has published extensively in Australia. Her book, The Upside of Down, was released in 2014. She has more than two decades of experience with health systems across six countries, supporting two of her adult children who live with a serious chronic illness.
See other reports from @WePublicHealth tweeps this year.