Earlier in the summer we shared our thoughts about increasing the levels of general awareness with the public about regulation of health and care. Inspired by common themes across our work with regulators we were interested to explore with others how important it is for the public to understand the role of regulation.
We said, if enough people were interested, we would host a conversation. So, in September a mixed group of 32 people gathered together. The group was made up of people from across all health and care regulators and people with an interest in healthcare regulation from a range of perspectives. The aim of the session was to create an opportunity for meaningful conversation and consideration about regulation literacy in health and care and to explore future collaborative opportunities.
We started with a list of questions that were drafted from our informal conversations with attendees and used our time together to explore these in more depth.
- What do we mean by the term regulation literacy and is there a description that is more accessible?
- What are the benefits of greater regulation literacy for different stakeholders? It’s not necessarily the same for all of us.
- What do patients need to know/understand about the regulatory/complaints landscape? Or about the requirements on professionals? In an ideal world, what would they know?
- Whose responsibility is it to inform them? What role should regulators play?
- What is a realistic level of regulation literacy to aim for and among whom?
- How can we motivate people to engage and how can we use this to work to support more meaningful engagement in general?
- How can we make information about regulation accessible, particularly for those groups who may find it more difficult to understand information?
- What do all the regulators do on this currently? What does the public currently know? (might be helpful to know this in advance as background?)
- Will it be better to do something jointly or combine that with individual initiatives?
Reflections on the value and definition of regulation literacy
Regulation literacy represents a set of challenges that regulators have been struggling with for years. It is surprising how little the public know about regulation and the regulators outside of the high-profile failings. The average citizen doesn’t know anything much about regulation. There is a sense that the public just feel vaguely confident that something is running in the background to keep us safe.
The landscape is complex and the problem is compounded when you add ombudsmen into the mix. Regulation literacy should be about helping people navigate this complexity.
Regulators need to have some level of visibility and be accessible, whilst recognising that most people do not want masses of detail around how healthcare regulation works. Currently the public don’t have the building blocks, the basic understanding about what regulators do, so regulators can struggle to have meaningful conversations with the public about more specific things, like regulatory functions.
People need to be empowered to hold professionals to account through the regulation frameworks; rather than passive recipients of care. Regulation literacy could help patients and the public to hold professionals to account. We know that patient’s relationship with health professionals is moving away from the ‘Dr knows best’ position, towards a more empowered patient model.
There is a general sense that the public approach often approach regulators with things they can’t help them with. Being clear about and managing expectations was raised as an important aspect of the regulation literacy. What it does and doesn’t do, what it can and can’t do.
People might more be interested at the ‘touch points’ where they interact with the system. For example, expectations about how a healthcare professional treats a person is a common area where people connect with regulation. The focus should be on what people can expect, and what to do if that doesn't happen.
Regulation literacy could be partly about helping people to navigate risk better; people don’t know what services are and are not regulated, and they can take big risks in terms their healthcare choices. It was also recognised that the public’s risk attitudes and appetites can be inconsistent.
The group felt strongly that we must avoid introducing more “regulatory jargon”. The front facing work shouldn’t necessarily use the term ‘regulation literacy’; it might be more helpful to talk about “health regulation and you” or something similar.
There was also recognition that the public and their understanding of regulation was connected to the idea of, ‘upstream regulation’. On the basis that if concerns are raised early and actions are put in place to remove risk to the public close to the point of care, people using services at large may not need to directly interact with professional regulators. This poses a counter argument to prioritising raising broad levels of understanding amongst the public.
Reflections on how regulation is perceived and understood by different publics
Regulation in the public’s eye can often be represented as a series of catastrophes and high-profile failings, and regulators may only become well known or well understand in relation to these bad events. All of the preventative work that goes on around education, standards, registration and revalidation is probably getting missed.
The language of regulation doesn’t help; it can make it sound punitive, impersonal and scary. People can also view regulators as forms of “red tape” and “layers of bureaucracy” rather than as organisations that keep them safe.
There is a growing challenge of eroding trust in institutions, this is especially relevant when you are trying to share the value of what regulatory bodies do. People who don’t understand institutions can tend to distrust them; so, it’s up to regulatory bodies to make it clear what they do, and the values they hold.
It’s important to recognise that people have different emotional reactions and responses to the health and care regulators: many will be indifferent, some might be angry with them or with what has happened to them, and registrants could well be fearful. This can colour how people think and talk about regulators and regulation.
Different psychological states can help and hinder our ability to absorb new information about the regulators – this might help to explain why levels of understanding are low. Whatever is done must keep things simple, and we should recognise that it will take time to create any sort of shift.
We need to remember that we are not communicating with one world or audience, we have multiple publics: we live in an age of fragmentation and bubbles in terms of media consumption, of mistrust, and of emotive filters that we use to make sense of the word, and of conflicting values and tribalism.
The contextual complexity is something we would benefit from understanding better; acknowledging that different positions and circumstances create different needs, challenges and opportunities to communicate and educate the public. You could go further and argue that there is no one single truth for what regulation is; as it’s always informed by context.
Registrants can get stuck when it comes to having a fuller understanding and relationship with their regulators because they are scared of them. The new direction of travel – upstream regulation and early remediation – represent a new and different dynamic that we all need to embrace.
A challenge when healthcare goes wrong is that it may well be a whole team and system that is failing, and yet individual regulators only have responsibility to try and fix “small slices of the pie”, so this can make their interaction with the person using services unsatisfying or frustrating. As a person using services - what would be reassuring would be that regulators are working together to help people get what they need.
If you would like to join in the conversations we are having about increasing regulation literacy please get in touch – we would love to hear from you!
Jessie.firstname.lastname@example.org and Tim.email@example.com