Involving patients, their relatives and carers and the public in research is important, as this strengthens and improves the quality of studies. It does this by making sure the work carried out deals with issues people think are important. Asking people about their experiences means their problems can be better understood, and research studies can be developed that may improve care, which can benefit patients, and those close to them. Patient and Public Involvement (PPI) is at the heart of YHHN and researchers aim to understand the experiences of patients with blood disorders in a number of ways, including via the use of:
- Questionnaires: These may be sent by post, or given to patients at hospital clinics. They usually ask about peoples’ lifestyles and quality of life, events in the time leading to diagnosis, or whether the right information was available to help make treatment choices. Sometimes, patients are asked to complete the same questionnaire more than once, and this is so the research team can look at changes over time.
- Face-to face discussions: These usually take place in patient’s home, or in a local hospital. Discussions may involve the patient and the researcher (though a relative/carer is usually invited to join if they would like), or could take place as part a group, usually at the hospital.
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Involvement in funding applications: YHHN researchers regularly develop projects, which different organisations (such as charity partners, or the Department of Health) are asked to fund. Several patients and relatives are always invited to join these applications, to make sure studies meet the real needs of patients and are likely to lead to improvements in care.
The YHHN Patient Partnership Committee
All YHHN activities involving patients are monitored by the YHHN Patient Partnership Committee. The people involved in this committee include patients, relatives and carers, doctors and specialist haematology nurses and researchers. The committee meets several times a year to discuss ongoing projects, and any issues patients may have raised about YHHN. On occasion, the committee also oversees specific projects that could lead to improvements in patient care.
How to get involved
At the time of diagnosis, patients are sent a YHHN information leaflet and consent form. Part of the consent form asks if patients are willing to complete a confidential questionnaire. Patients who tick this box are sent an initial questionnaire about their background, current illness and quality of life; they are also sent further questionnaires about their quality of life, so researchers can monitor changes over time. The consent form also asks if patients can be contacted again should further research be considered. People who tick this box may be sent further questionnaires, invited to take part in a discussion, or asked to join a funding application or the Patient Partnership Committee. All our study material contains a Freephone number, and we would encourage anyone who wants further involvement in the project to contact us using this number to discuss further opportunities.
How we communicate with patients, their families/carers and the public
YHHN communicates with patients, their families/carers and the public in a number of ways, including:
- YHHN newsletters
- Research summaries published on this site
- Charity partner blogs and publications, for example Marie Curie
- Patient conferences
For those wanting to know more about our study findings, publications can be found by linking to the Haematological Malignancy Research Network website.