Positive Ageing Research Institute, Faculty of Health, Education, Medicine and Social Care, Anglia Ruskin University – Written evidence (INQ0020)

Authors:

Dr Pamela Knight-Davidson - Research Fellow in the Positive Ageing Research Institute and Principal Investigator on the Seas2Grow programme

Dr Pauline Lane -Interim Director of the Positive Ageing Research Institute

This document provides evidence to the House of Lords Select Committee for Science and Technology in relation to their inquiry into aging, science, technology and healthy living. It specifically relates to the theme on “Technologies that can improve health and wellbeing in old age, and technologies that can enable independent living in old age” and addresses the concern below,

“To determine whether the Government's ambition to increase health span is achievable in principle, and which approaches may be most successful in practice. It will also look at the ways in which science and technology can be used to mitigate some of the effects of ill health in old age, and to support older people living with poor health”.

1. About us

We are social researchers in the Positive Ageing Research Institute at Anglia Ruskin University (PARI). Over the past three years, we have developed a ‘living laboratory’ where we work with and for older people, to co-develop and test technologies and services – aiming to enable older people to live independently for longer and to accelerate the development and delivery of technological and social innovations to the market. The European Regional Development Fund is currently supporting the research (as part of an Interreg 2 Seas Project)- and we are working with partners in four European countries. Please find a link to the websites: Seas2Grow: https://www.seas2grow.com/ and the Agetech accelerator: https://agetechaccelerator.com/.

Specifically, our PARI living laboratory has been involved in co-creating technological health and social innovations for ‘ageing in place’ and we place a strong emphasis on user-centred research. Our research methods include field research (for real-life testing of products and services), needs finding through ethnological and observational studies, participatory research methods and human factor studies. We maintain a large local and cross-border panel of stakeholders to allow testing, advice on product development and market orientations. We have been involved in:-

•              The selection, testing and evaluation of 34 products in the areas of health (telehealth, telecare, falls detection, dementia, and mobility) nutrition, lifestyle and social integration, with the aim of supporting autonomy and independent living and with the aim of accelerating their entry to the market. Many of these products have been tested by older people in their own homes.

•              Conducting an in-depth study into the current state of housing and the wishes of older people in relation to future living arrangements.

•              Working closely with different stakeholders in health and social care including businesses developing products; local authorities commissioning and providing services; third sector organisations; other universities and older people themselves, to understand the features of the most promising, effective, usable and acceptable technologies and the best ways of implementing their use with older adults.

2. Grand Challenge for Ageing

The UK government’s industrial strategy, Grand Challenge for Ageing[1], suggests that technology will play a significant role in the future, helping older citizens to lead independent lives. It recognises the need to respond to the needs of an ageing population, including an increase in the age dependency ratio and the economic costs incurred by a loss of independence. However, these challenges also present opportunities to contribute to the global Silver Economy resulting from technological innovation, the creation of jobs and economic growth - aiming to create an economy that works for everyone, regardless of age. In the following sections we shall outline some of the critical debates concerning ageing, technology and social inclusion.

3. Ethical issues in home and personal technology

Much of the discourse concerning technology as a ‘solution to ageing’, wrongly homogenises older adults as people at risk (of falls, fragility etc.). Consequently, there is a trend for products to be weighted towards the monitoring / surveillance of older people often via telecare and telehealth (such as connected sensors that can monitor movement, vital signs and track people in their homes and outside the home). While the intent of many of these products is to keep older people safe and prevent potential health conditions, they also raise a number of ethical issues. Namely:-

•              Health monitoring technologies usually have the capability to connect to remote servers, held either privately by individual companies or larger corporations. While this many generate significant commercial opportunities for digital developers, many older people are not aware that their personal data is being collected.

•              We have found that some public and private social care providers are promoting specific commercial products (easily available on the market) but do not seem aware of issues concerning data harvesting and do not have information available for older people or their staff about the use of personal data in commercial products.

•              There appears to be little national guidance/ policy on the rights and privacy of consumers (as illustrated in the data breech by Cambridge Analytica). Our research suggests that many older people who have not been brought up on modern technology are often aware that there might be risks but they are often unclear as to what the actual risks might be and what choices they have over the use of their own data.

4. The image and uptake of ‘age-technologies’

With a significant increase in the number of people still working into their 70s, the very construct of ‘being old’ is being disputed and in our experience (of running the Living Laboratory), many older people reject the homogenisation and wrongful categorisation of being identified as burdensome, frail, and economically inactive. Moreover the aesthetics of much of the technology needs a lot to be desired, as it is often designed to look like medical equipment. Consequently, the promotion of technology ‘designed for the old’ (rather than technology for all) not only has a problem with its image but the actual uptake and use of these technologies is slow. As a result, while many small companies are making the considerable financial investment needed to develop products, they are often not taken up by the market. Our research suggests that older people have expressed concern about:-

a) Stigmatisation- Assigning older adults to narrow characterisations has the unintended effect of creating stigmatisation and most of the older people (who have worked with us over the past three years), have stated that they do not want products that identify them as being old. As a result, they often deny that they are the intended user of these technologies, producing alternative statements positioning themselves as having an active social life and/or a relatively high level of physical fitness. For example, the email below is from a participant, who was invited to a co-creation session of a connected device:-

“I'm happy to say I'm too fit to help with either of these! I had both hips replaced 15 years ago and haven't looked back, able to walk better than ever before and no problems with balance.”

b) Privacy and security- Further, there is great concern about privacy and security. The following email was sent in response to one of our advertisements inviting volunteers for our living laboratory- although this is a long quote, we think it typifies the experiences of many older people:

“I wonder whether I might be permitted to comment on one of your projects. The project to which I refer is described as follows:

‘Sensors which map out the normal movement patterns of an older person living alone. If an unusual pattern is detected, such as inactivity suggesting the person may have fallen; a change in sleep pattern; or visiting the toilet more frequently, relatives or carers can be alerted’.

I find myself wondering why everyone apparently assumes that older persons do not want or need any privacy. In my experience, this assumption is invalid. Personally, however old, vulnerable or unwell I was, I would rather be dead than have my every move observed in the manner you are suggesting. Over 65s are very much still human beings, not animals. I do not for one moment doubt the good intentions informing your work, but like so much that is being planned for dealing with the problem of an ageing population, to rather understate the case, I do have serious doubts about how positive it is for the older persons concerned. I would like to suggest that it would be helpful if a clear distinction were to be made between what is positive for the elderly and what is positive for those responsible for their care. I would also say that this problem is part of a wider trend that affects everyone receiving health or social care today, a trend that treats privacy and confidentiality as something to which lip service must be paid, but which should covertly be disregarded altogether … particularly where older persons are concerned, some of whom may be disadvantaged in the fight for their privacy and human dignity, in a world that is busy finding convenient ways of dealing with the problem they represent. This may be positive, but from whose point of view? I think it is at least reasonable to ask this question, though there may be no convenient answer. Perhaps the price of being kept alive is too high.”

(NB: Although we sought and received permission to use the information in the above email, it should be noted that the person sending the email wishes it to be known that any other views presented in this document do not represent their own views.)

c) Provider perspectives: Despite increasing awareness of the benefits that innovation and technology might add, providers of health and social care have expressed concern with regard to identifying, adopting and benefiting from innovations. Further, the market for goods is fragmented, such that products are not readily interoperable (i.e. able to exchange and make use of information) among existing health and care systems.

d) Innovator perspective: Innovators express concerns about understanding regulatory barriers associated with accessing the health and care markets (e.g. procurement procedures CE marking, GDPR and medical devices directives).

5. Possible solutions

In relation to the aims of this inquiry, based on our research in the PARI Living Laboratory (and the reading from secondary sources) we would like to propose that the House of Lords Select Committee might like to consider the following:-

Encourage the eco-system approach to the co-development of products: To encourage the effective design and optimal uptake of technological solutions and new products, more needs to be done to,

•              Encourage work within the domain of systems and infrastructure as well as ‘point solutions’’ (i.e. products for individual use). The current focus seems to be on individual products and point solutions.

•              Innovate (as well as designing systems and products) with the people who might want to use them.

•              Support businesses to understand the necessity to meet the technological needs of all of us, over our life cycle.

•              Realise that products also have a life-cycle: we should be designing products that are environmentally sustainable (e.g., don’t contribute to landfill at the end of use)

Address the issues concerning the rights and privacy of everyone in the development and application of technological solutions and badge-mark ‘safe to use’ products. Currently commercial companies are developing products that allow data harvesting - often without the consent of consumers – it is important that everyone is aware of vulnerabilities and risks in the products they purchase and this is especially true if companies are collecting health and other personal data. Heath and social care commissioners, who are purchasing products on behalf of clients, also need to be aware of these risks as public sector works have a duty of care to look after their clients.

Change the rhetoric concerning older adults: We believe that the homogenisation of ‘older people’ is unhelpful. There needs to be change. We need to develop a more inclusive discussion about the role of technology in all of our personal and public lives. This might be achieved through a stronger emphasis on ‘life course processes’ rather than simply ageing.

Innovate and produce goods for the life course: To encourage the uptake and actual use of technological innovations that might be of benefit to older people, we must be mindful that the most promising products (with the widest market application), will be those that are suitable for everyone- i.e., which do not stigmatise any social group.

Enable businesses to understand regulatory and systemic barriers. Health and social care innovators need to integrate products with existing systems and/or design new interoperable systems with health and social care providers, to identify suitable products for their communities.

Develop a recognised system, where consumers and providers can assess the quality and cost of products. With so many point solution products on the market- it is difficult for consumers to make a quality and price comparison of products.

Encourage product developers to develop more marketable products for home use- In the UK we have a thriving creative economy, yet this creativity is not often applied to products to enable independent living- we need to support initiatives that encourage the creation of products that do not look clinical or evoke stigmatisation

17 September 2019