Should we, members of the public, be involved in developing personalised healthcare?
It seems like a silly question if it is to benefit our own health, but should we really be involved or is the healthcare system too entrenched in a ‘do as I say’ culture to truly embrace this change? Isn’t personalising our healthcare just another name for the person-centred care we are already supposed to be experiencing? Maybe it is different, and I have missed the nuance in terminology. If it is one in the same, why are we reinventing the wheel? Hasn’t person-centred care achieved results? If not, why not? Perhaps my perspective can provide some insights.
My approach is simple. If we move to a future of personalised care, can we please ensure the patient, is considered, informed and educated to be a participant? If we expect a move to personalised care, things need to change. Lots of things need to change. Change must occur at every level of the health hierarchy. It will be confronting for many, from the decision makers at the top to the patient at the other end of the system.
People just want to feel included in the decision-making process and respected for making an informed choice…
Over the last 10 years I’ve seen the increase in reference to health literacy, person-centred care and more recently, the term social prescribing. It would be fair to say these terms are meaningless to the average person. Do they care about the jargon? My experience suggests it is irrelevant to the wants and needs of the health consumer. People just want to feel included in the decision-making process and respected for making an informed choice that may not align with the health professional opinion but is relevant to them.
As an independent, volunteer advocate for health consumers, I have the privilege of talking with people from every walk of life, from all over this vast country. I listen to and document the real stories from the coalface…
The young mother who has sat in the rural Emergency Department with a sick child for five hours and at midnight goes home because she still hasn’t been seen.
The woman who has had a dreadful experience in hospital, is upset and writes to the hospital to describe the problems in the hope some improvement can be achieved but is ignored and receives no response.
The elderly man who is told by the cardiologist he should lose weight. When he asks for a referral to a dietitian, is told to get his wife to look in the phone book.
The woman with elevated blood pressure who is prescribed medication without discussing lifestyle changes that could prevent a lifetime of medication.
The woman who asked the pharmacist to show her how to put in some eye drops and was told to look it up online because she was too busy.
The elderly woman who was treated with contempt by the clinic receptionist when she asked if the next appointment could be in the morning instead of afternoon, to avoid standing in a crowded bus on the way home.
The young mother who is having a difficult delivery listening to the resident and nurse mocking her in their language not realising this woman could understand all that was being said.
These are just a small sample of the problems that are entrenched in the current system.
These stories are repeated time and time again. They contain a powerful message. The health industry hasn’t yet found the respect, the inclusiveness, nor the ability to be focussed on the needs of the individual.
So too, there hasn’t been an emphasis on empowering the individual with the knowledge that they have rights too. Being treated with respect, compassion, empathy and basic good manners should be a given.
Add to this the complications associated with access, cost and capacity to get health care when you live in rural and remote parts of Australia. While incomprehensible to those with 24-hour Medical Centres in the next suburb or a major hospital nearby, it is the sad reality of health service provision endured by those who live outside the urban sprawl. This is a further stumbling block in the provision of personalised healthcare for many Australians.
If personalised care is to be emphasised, there must be a shift in attitude across all aspects of the health industry.
Implementing the personalisation of healthcare is going to be a long journey. Is it achievable? Is it realistic? If personalised care is to be emphasised, there must be a shift in attitude across all aspects of the health industry. Everybody must agree and everybody must be part of the process. It will be challenging.
How do we do this? Based on conversations with people in the waiting rooms, at community groups, through webinars, committees and public forums, my perception is that the community just needs to be informed. If there is a system called person-centred care, why don’t we tell people? If there is a shift toward personalised care, why don’t actively promote it?
Sharing this new direction will promote opportunities for the person at the bottom of the health ladder, to understand what they should expect. Without that, the process is one-sided. It must be a two-way street. All participants must be involved.
… failure to inform and include the public will result in failure to achieve the benefits of personalised care.
Public awareness campaigns through social media, television and print media, YouTube clips, promotional material in plain language for display and distribution in all health and health related facilities must be utilised. Getting the message into the community is step one. Step two is teaching people how to be confident, competent and interested in being part of this changing dynamic. Step three is ‘the why?’. Explaining ‘why’ brings clarity to the vision and removes the cynicism of it being just another change for change sake.
It is my contention that failure to inform and include the public will result in failure to achieve the benefits of personalised care.
Let’s embrace the challenge but recognise that the person for whom all this applies, just needs to be kept in the loop!