Helping to improve care for patients

If you are interested in helping to improve healthcare for yourself and others, there are many ways to get involved, from participating in research, to sharing your experiences of illness, suggesting improvements to care pathways or supporting the training of healthcare professionals. Look at the sections below for further information about how to get involved and make a difference.

As you will see from some of the patient quotes and videos below, as well as being enjoyable experiences that benefit others, taking part in research and training, or sharing your ideas about how healthcare is provided, can really benefit you. In particular, it can give you the knowledge and confidence to talk with your clinician about your health problems and tailor your care to what really matters to you.

Sharing the voice of 'the patient'

 

I think the patient voice is vital. I was worried it would be lip service but I couldn’t be further from the truth. You see your ideas transferred onto paper… they listen to what you say and value what you say.

 

North Staffordshire patient involved in research.

If you want to share your experiences with others to support them on their own healthcare journeys, consider writing an article for publication (www.pxjournal.org). If you want healthcare professionals to read and learn from your personal experiences, consider writing an article for the BMJ, for their section, “What is your patient thinking” - www.bmj.com/specialties/what-your-patient-thinking

 

You can also share your healthcare experiences through involvement in research, being interviewed about your experiences of having a certain condition or being part of a patient and public involvement group helping to shape the priorities for future research into your health condition.

You can also share your healthcare experiences through involvement in research, being interviewed about your experiences of having a certain condition or being part of a patient and public involvement group helping to shape the priorities for future research into your health condition.

Getting involved in research

Being involved in research has given me the confidence to engage in that dialogue more, with a GP or my consultant.

North Staffordshire patient involved in research.

There are many different ways to be involved in research. You could be an active participant in a research study, or involved in helping to develop, understand and share research findings. You could have a role on a funding panel, helping to decide which research is awarded a grant, or you could volunteer as a research champion, helping to get others involved in research.

 

Here is a link to video produced by the National Institute for Health Research (NIHR) about why it is important to get a public viewpoint on research (https://youtu.be/o8LjeuVSMdc) and who can get involved in research (https://youtu.be/CCsW9XAipec).

 

In the video below, Trina Rule, a patient with lived experience of long-term health problems including rheumatoid arthritis, talks about her valuable experiences of being involved in research projects.

If you would like to hear some more real life stories from people involved in research, follow this link.

The NIHR School for Primary Care Research is a partnership between nine leading academic centres for primary care research in England, including the University of Bristol, University of Cambridge, Keele University, University of Manchester, Newcastle University, University of Nottingham, University of Oxford, University of Southampton and University College London. Research being performed at these centres is helping to inform and improve the care provided by GPs and their primary care colleagues. If you would like to contribute to primary care research, consider contacting your local research department (www.spcr.nihr.ac.uk/PPI/get-involved/ppi-contacts).

Being involved in research has made me ask more questions. If for instance, my GP was to say we should look at doing this… I now question why is that? Is there another way of doing that? The more I know, the more I can help myself and services.

 

North Staffordshire patient involved in research.

The NIHR School for Primary Care Research have produced resources for the public to help them contribute to research, which are available here (www.spcr.nihr.ac.uk/PPI/resources-for-the-public).

 

The NIHR website has links to other research projects you can get involved in (www.bepartofresearch.nihr.ac.uk/). There is also information about how to be a reviewer, helping to decide which research should be funded by the NIHR (www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/join-a-funding-committee.htm) or a Research Champion (www.nihr.ac.uk/patients-carers-and-the-public/i-want-to-help-with-research/research-champions.htm), spreading the word about health and care research to patients and the public.

Understanding research

By getting involved in research, I’m beginning to understand the way things work and how they could be improved.

North Staffordshire patient involved in research.

If you would like help with reading and understanding different types of research, INVOLVE have produced an online platform where learning resources are shared.

(www.learningforinvolvement.org.uk/)

 

If you are interested in understanding more about different research terms commonly referred to, have a look at this glossary (www.keele.ac.uk/pcsc/research/ppie/usefulresources/).

Being a member of the PPG gives me an insight into the work done at the practice and a chance to get to know the staff better. I like to help when needed with questionnaires and displays that help me to understand other patients views of the practice. I have no medical background but have learnt a lot about how things work in the general sense of the local NHS services as well as picking up a bit of knowledge about medical matters. The group is very mixed and we have some interesting discussions in a friendly atmosphere.

 

Patient Participation Group Member from North Staffordshire.

Supporting improvements at my local GP practice

 

If you want to help improve the care of patients in your area, consider joining your practice Patient Participation Group (PPG). Here is some information on what a PPG does (www.napp.org.uk/overview.html) and how to join your local PPG (www.napp.org.uk/joiningappg.html).

Supporting local, regional and national improvements to healthcare

 

Volunteering to work for a charity in your area can be a great way to support members of your community. Your GP practice social prescriber may be able to advise on local groups you could become involved with, that may have particular relevance to you. Online, you could explore local, regional and national opportunities to contribute to charitable organisations that have been established to support people with your condition. You could help to provide a patients’ perspective to committees developing guidelines for healthcare professionals on your condition (www.nice.org.uk/get-involved/our-committees/what-lay-members-do).

 

If you would like to contribute to regional improvements to healthcare, consider becoming a member of your local Clinical Commissioning Group (CCG), to help with decisions about what healthcare services are needed in your local area (www.nhscc.org/networks/lay-members-network/).

 

In the video below, Mike Brooks, a member of the Keele Research User Group, talks about the valuable contributions he has made through his involvement with the Haywood Foundation and the many other opportunities this has led to.

Supporting the training of healthcare workers

Volunteer “simulated patients” can help to support the teaching, learning and assessment of healthcare trainees. Most universities actively seek support from patient volunteers for practice with history taking, simple physical examinations and assessments. Patient volunteers can also be valuable on interview panels for entry to university courses such as medicine.

 

Click here to find out more about the role of patients as educators (www.sheffield.ac.uk/medicine/patients-educators) and about being a simulated patient (www.medicinehealth.leeds.ac.uk/leeds-institute-medical-education/doc/patient-carer-community/page/3; www.nottingham.ac.uk/mhs/facilities/clinical-skills/resources/simulated-patient.aspx).

Preparing for an appointment

Finding information about my health problems

Making treatment decisions

Helping to improve care for patients