Today continues our series of blogs looking at public views on the four themes that guide our work. A quick reminder of these themes:
- Climate and Environment: How can we live sustainably?
- Data, AI and Robotics: How should we shape our digital world?
- Health, Ageing and Wellbeing: How should we live healthy lives?
- Life Sciences and Biotechnology: How should we shape the future of life?
Our first blog gave an overview of the views and values that run through all dialogue, regardless of topic. Last week, we looked at climate and environment, and how we can live sustainably.
Today, we’re looking at health and wellbeing. We’ve supported 15 dialogues that touch on these topics, each of which adds a little more to the picture of how we should live healthy lives.
What people tell us about healthy living falls into two main areas: the first is health and care and the second, wellbeing and healthy lives.
Health and care
People involved in Sciencewise dialogues value science and technology in health and care and support innovation, as long as there are safeguards in place. Four common themes stand out in the dialogues.
1. Checks and balances are needed for private sector involvement in healthcare
For the public, healthcare means the NHS. They’re instinctively nervous of the private sector in healthcare and don’t immediately see its value. They want checks and balances in place when profit is involved, so that the commercial sector can’t make excessive profits from people’s ill-health or from NHS health data. They want assurances that access to healthcare is available to all. They don’t want a two-tier system, where richer people have access to better care and poorer people have to make do with substandard care or limited access to new treatments.
2. Commercial access to health data is conditional
People are happy with the NHS using their health data for their own care and most are also OK with it being used for planning. But if health data is being used in research done by private companies, they want to make sure that the right protections are in place. This means research passing four tests:
- Why? Research has to be in the public interest and there has to be a social benefit.
- Who? The researchers have to be trustworthy (the report on living healthy lives outlines what makes them so)
- What? What data is being accessed? People want to minimise the risk that individuals can be identified or that data can be mined for purposes outside the research specified
- How? Data must be stored securely, not open to loss or hacking, or to misuse by researchers.
Participants don’t want their health data shared with insurance or marketing companies, under any circumstances. Even when there is potential for lower premiums for people with a lower health risk, they’re not enthusiastic: they do not trust companies to pass on these savings and they think people whose data suggests they are at higher risk will just pay more.
3. Informed consent is vital
As technology advances, people think that consent processes will become increasingly complex, particularly as advances in genetics bring implications for a family and not just for the individual.
Nonetheless, they want consent processes to be simple and clear. People need to know what they’re consenting to and they need time, space and unbiased information to make informed decisions. When the request for consent is about research, people don’t want to restrict researchers unnecessarily, but do think that most research should be opt-in, not opt-out.
When it comes to sharing health data, though, whilst still wanting a consent-based approach they’re generally ok with an opt-out model, as long as government or regulators aren’t able to override the limits people place on their consent.
4. New technology is welcomed if overseen by medical professionals
People are open to innovative solutions, particularly those with the potential to treat or prevent serious illnesses, with clear benefits and limited risks. These might include, for example, improvements in the speed and accuracy of diagnosis, such as genomic screening or stratified (also known as precision) medicine. However, they are less confident about new diagnostics that can identify diseases with no known treatment.
The human touch is crucial. People want support from humans to interpret technological diagnoses and decide on next steps. Well-qualified practitioners are especially important if there is no effective treatment for an identified condition.
Advances in healthcare need careful implementation. Participants are adamant that we avoid postcode lotteries or a two-tier health system. Of equal concern is that technology will open the door to designer babies or lead to eugenics.
In more recent health and wellbeing dialogues, the impact on people’s views of COVID-19 and the vaccination programme has been evident. In particular, people are concerned that vaccine hesitancy might also apply to the take-up of other new technologies in health and care, leading to more inequality. Transparent and complete information about new technologies, such as genomic screening, are therefore considered essential.
Wellbeing and healthy lives
Sciencewise dialogues have covered a diversity of topics related to wellbeing and healthier lives and two clear themes are evident:
- Importance of autonomy for citizens
- Compelling businesses to do the right thing
1. Importance of autonomy for citizens
People want to make choices about their own lives. They are willing to accept new science and technology that improves wellbeing and helps us to live long, healthy lives. However, they are not always ready to welcome these technologies into their own lives and want to keep control over decisions about what to adopt. Just as they want individual agency and clear consent processes in decisions they make about their healthcare, they want to retain choice when it comes to making wellbeing decisions.
How do you change people’s behaviour? In some cases, participants feel that society as a whole would benefit most from changes in behaviour or lifestyle, whilst the benefit to an individual of making a particular change in their own life is less clear cut. Many participants look at the cost of adopting new technologies and don’t see this as a priority. Where this is the case, they suggest that the government should provide support, encouragement and inducements for people to do the right thing.
2. Compelling businesses to do the right thing
Business is different. From food producers to private landlords, people want independent regulators to take a strong approach to ensuring that businesses operate in the interests of society. They see the potential for science and technology to solve many of the challenges to wellbeing but only if private sector energies are directed appropriately, and not focused solely on making profits.
Participants think businesses should help people to become informed consumers, for example, by providing clear information on packaging which can support people to make better decisions. But, they do not think businesses will do this without enforcing regulation.
People see the healthcare private sector as very profitable and are not averse to interventions which might affect those profits. As they learn more about the role of the private sector in healthcare and wellbeing, they are increasingly willing to accept it as part of the system. However, they continue to expect that regulators will watch closely to ensure businesses live up to their commitments, do not make ‘excessive profits’ and are working towards societal good.
Our dialogues clearly show that health, ageing and wellbeing are very personal – we see that it is not only ‘my body’, ‘my choice’, but also ‘my food’, ‘my house’, ‘my well-being’. However, they’re also committed to private sector involvement having a social payoff or public benefits and don’t want to see excessive profit. While they think that the common good is often served by encouraging and supporting scientific and technological development, this does not necessarily mean they are willing to commit to being early adopters of such developments when they become widely available. In some cases, they know that their behaviour should change, but will need support and inducements for this to happen
Take a look at our Projects and Impacts page if you’d like to find out more about some of our previous dialogues. And to hear more about the impact that public participation can have on participants, see here.