This report is aimed at all health services in the UK, these include NHS England and Clinical Commissioning Groups, With the aim to provide information on a range of ways to involve service users, patients and carers in these services. The report sets out several key points for health care services on how to involve service users, these include:
- Self-management (expert patient program).
- How CCG’s can involve patients in the commissioning process.
- How participation can be measured.
- Barriers to involvement.
- Recommendations on how to involve patients in health services.
What is involvement?
Involving service users in healthcare provision means encouraging the participation of patients, service users and carers in the development of care plans and services, using patient’s knowledge and experiences to shape how care is implemented. This approach to health care can lead to many benefits for both service users and provider ,these include a better understanding of patient’s needs, a more equal share of power in decision making, and more effective provision (Gilbert, 2015, as cited in Wilson 2019 A ). Involvement can be implemented in different ways such as.
Having a more person-centred approach, this means treating the service user as an individual, acknowledging that they have valuable knowledge and expertise of their own care needs and allowing them more control over what care and support they receive. Co-production of care is one way of achieving this, as it requires care providers to identify health care needs collectively with patients. This approach also involves cultural shifts in terms of seeing service users as equals to service providers, when this is implemented successfully it can lead to a more effective service. (Boyle and Harris, 2013, as cited in Wilson 2019 B).
Education on Self-management of care is an approach that involves patients learning how to successfully manage their own health care needs with more confidence than they may have had previously. Educating people about their health also helps to create a more equal share in power, as it gives patients transferable skills that can be used when collaborating with professionals.
Service users, patients and carers can participate in the clinical commissioning process, CCG’s should encourage public participation in the commissioning of services, allowing service users to voice what is important to them, to contribute to plans, proposals and decisions about services that they use or may want to use in the future.
Ways in which service users, patients and carers can become involved in health services
Arnstein’s ladder of participation (please see figure 1) can be used to measure the extent to which people might be asked to participate and also to measure what degree their participation had an impact over decisions made (Arnstein, 1969, as cited in Wilson 2019 , C). The ladder explores different levels of participation that range from superficial participation, where taking part does not affect outcomes, to more significant involvement called citizen power, in which participants can impact on decisions made. The ladder is a useful visual tool that can be adapted to suit different situations across health care. However, there are criticisms that it does not, as user having different circumstances and assumes that everybody wants to or can participate to the same degree which is not always the case.
One approach that aims to include patients on the upper rungs of Arnstein’s ladder is co-production of care. Co-production aims to restructure the patient and professional relationship, with a more equal share of power between the two. INVOLVE, a national government-funded advisory group set out five key principles for co-production in research, these principles help to outline what co-production is in practice (Hickey et al., 2018, as cited in Wilson 2019, D).
- Sharing of power – Patients and professionals work in partnership to tailor support to suit what is best for that individual patient.
- Including all perspectives and skills –Involving all service users in their service regardless of ability or backgrounds.
- Respecting and valuing the knowledge of all those working together on the research – Service user and provider are all of equal importance, everyone is involved in the design and delivery of services.
- Reciprocity – Everybody benefits from working together practitioners can learn from patients and move forward positively together.
- Building and maintaining relationships – patients need to feel like their input is valued and respected by professionals.
Although co-production can bring positive changes into the way healthcare is organised , it is not free from criticism, with some researchers stating that co-production in research can lead to poorer quality outcomes due to the lack of knowledge from lay participants (Staley, 2009, as cited in Wilson 2019 E ) it could be said that these attitudes devalue a patient’s input and could discourage involvement.
The expert patient program developed by the department of health and social care in 2002 (Wilson, 2019, F) is another significant way of involving service users through educating patients about self-management of care needs. This course aims to empower service users by providing them with the information and skills they need to look after their own care needs and also work more effectively with professionals in developing the best support package to suit their wants and needs. This approach helps to break down power imbalances as patients are more educated and therefore can be equal partners in the decisions. On the other hand, this approach does not account for more complex patients (Kroon et al, as cited in Wilson 2019 G) who may, for example, have learning disabilities and not understand the course information. There is also criticism that the program aims to change the person and does not consider external social factors that can affect healthcare such as the economy and living environments (Wilson et al 2007 as cited in Wilson 2019, H).
Clinical Commissioning Groups are responsible for anticipating what services a population will need and for delivering on this within a certain budget, usually set by local authorities and paid for by taxpayers (Wilson,2019, I). Patients and the public are at the heart of the clinical commissioning cycle (as seen in figure 2). Some of the ways CCG’s can get the public involved include surveys and community engagement events, these strategies are the easiest to carry out, but are often seen as tokenistic gestures, in that they give a platform for sharing ideas but do not give the service providers any real say in decisions that are made.
A more meaningful way for patients to participate in commissioning is through patient participation groups, these are usually made up of experts by experience. These participants can be included in discussions surrounding decision making, service design and in the monitoring of services such as Care Quality Commission inspections of hospitals .Sometimes professionals can discourage participation in this due to their attitudes towards participants due to worries that they are there to lobby for individual needs rather than that of the population .
Barriers to involvement
Barriers to involvement can occur for many reasons, this is because each patient has their own set of circumstances and experiences that will impact both on their desire and ability to be involved (Okolo and Matthews, 2016; Beresford, 2013, as cited in Wilson 2019,J). Certain groups within society are often harder to reach and not as involved in services, these groups include minority ethnic groups, those with multiple impairments and complex needs. We see an example of this in the case study of Mohammad who has complex care needs who lives with Amina his wife and also his main carer (Wilson,2019 K). Amina struggles with aspects of Mohammad’s care, however, she is not confident in putting forward suggestions to services on how to make care more easily accessible for Mohammad, due to issues related to stigma, lack of knowledge and cultural barriers holding her back. Beresford (2013) as cited in (Wilson 2019, L), set out these following barriers to participation.
- Devaluing – This is when practitioners attitudes discourage involvement, for example, in co-production professionals devalue lay participants by not valuing their contributions and saying it leads to poorer quality research (Staley, 2009, as cited in Wilson 2019, E) . This could be overcome by educating patients in the management of their conditions, making them expert patients, so that they can provide educated answers and suggestions and useful professionals.
- Tokenism – This is when participation does not have any effect on outcomes, in this case, it would be important to make participation meaningful with service users gaining more citizen power when being involved with services , they must feel their taking part has an impact.
- Stigma –Stigma is when people have negative assumptions about someone or something due to certain characteristics such as culture, religion, disability etc. Amina was afraid to speak out as she dressed in traditional Pakistani clothing and feared her religious beliefs would mean people would make assumptions about her (Wilson,2019 K). Barriers like these can be overcome by ensuring participation groups include a diverse range of participants with different experiences, circumstances, and backgrounds to ensure the population is being considered as a whole and that minority groups have a voice.
- Low confidence and self-esteem – In the case study Amina (Wilson,2019 K) has low confidence and self-esteem which meant she felt her ideas would not be taken seriously. The expert patient program could help in this sense to help build on the patient’s self-esteem and knowledge about handling their condition.
- Inadequate information about involvement – Information could be shared in different ways through word of mouth directly from health care providers, leaflets, social media. information could be available in different languages or be written to be more culturally sensitive like suggested in Bibi study on diabetes and communication with south Asian communities (Bibi et al 2014, as cited in Wilson 2019 M).
- A. Making involvement in health services as accessible as possible, providers should make reasonable adjustments to ensure participation can happen, for example. the attendance of an interpreter at appointments for those who do not speak English, text messaging services for the hearing impaired, braille available for the visually impaired.
- B. Information on how to get involved should be clear, easily understood, and also be shared over a variety of platforms such as email, leaflets given at appointments or posted out, advertisement through posters , all providing clear details on whom to contact to discuss participation further. The information should also be available in different languages, this ensures hard to reach groups have access to it.
- C. CCG’s ensuring participation is meaningful and not tokenistic, the public should feel their participation has an impact on outcomes. therefore, it is important to avoid tokenistic gestures where possible. It is also important to encourage minority groups to become involved in commissioning of services, this way CCG’s can be assured the whole population has been taken into account ,as often voices of these groups are left pout and in turn, services are not directed or adapted for them in any way .
- D. Educate patients so they can make fully informed decisions, allowing them to work more efficiently with professionals and share power equally in care. It would seem for service users to gain more power in their care that participation should always fall into citizen power category ,however , not all participants want to get involved or can get involved to the same degree, therefore, practitioners should not view participation in itself as the main goal but focus on how best to involve individuals to suit their own health needs or circumstances.
There are many ways health services can involve service users, these all range in levels of participation, from more tokenistic involvement like surveys to more citizen control type involvement like co-production. It could be said co-production and Educating service users help to give more citizen control as they aim to shift the balance of power and put patients on a more equal footing with health care providers. The commissioning process must consider the needs of everyone; however, when it comes to involvement some minority groups are under-represented and the attitudes of professionals towards lay participants can create barriers to involvement. The biggest challenges to involvement appear to be creating equal opportunities, involving minority groups and power issues in care.