Get Involved!

The NET Patient Foundation does undertake in house research focused on patient experience and unmet needs. We would be grateful if you could spare a few minutes to complete any surveys posted here, your experience is invaluable. We will keep you posted with results of surveys through our newsletters, website and social media channels.

Thank you. 


Lung NEN Survey

If you have a Lung NEN (NET or NEC) we would be so grateful for your feedback by completing the survey below. The survey contains 18 questions which will enable us to find out what information and support is available for anyone affected by a Lung Neuroendocrine Neoplasm. There is also space for you to comment on what type of support or information you need now, or think you may need in the future. There are different types of Lung Neuroendocrine Neoplasm: typical and atypical, small and large cell neuroendocrine carcinoma and a condition called DIPNECH. You can complete this survey if you have any of the types mentioned. 

Click here to complete the survey

Thank you for time and experience.


Neuroendocrine Cancer Patient Specialist Centre Survey Involvement : Shaping Care for the Future

The NET Patient Foundation is working with Quality Health and ENETs to pilot a new NET patient experience questionnaire – one that will play a role in the future assessment and improvement of NET services, not only here in the UK but also across Europe and beyond!

The purpose of the questionnaire is to provide information which can help ENETS monitor and improve the future quality of health services and social care for people with Neuroendocrine Cancer who present at Specialist NET Centres.

ENETs is the European Neuroendocrine Tumor Society, which was founded in 2004 to bring a variety of dedicated specialists together, to ensure consistency in expertise, research and knowledge for the European Neuroendocrine Community. They are the governing organisation responsible for assessing and approving accreditation to NET Centres of Excellence across Europe. 

The questionnaire is about the care and treatment you have received at a Specialist Neuroendocrine Tumour (NET) Centre – so please only patients comment on any care and/or treatment you have received at the Centre – not local hospital or clinic unless this happens to be a Centre. (Throughout the questionnaire you will also see them referred to as ‘Specialist NET Units’, ‘NET Centres of Excellence’, or ‘Specialist NET Centres’). A list of all Centres can be found on the ENETs website.

We, at the NPF, firmly believe that patient involvement, in service review and assessment, is vital in order to shape NET services appropriately to match NET patient need. Your responses are therefore invaluable in helping ENETs, not only to develop and refine the questionnaire, but also gain an insight into your experiences. Your answers to, as well as about, the questionnaire will be gathered into a GDPR compliant dataset that may be used for this purpose.

Taking part in this survey is entirely voluntary and any personal details will be protected – confidentiality maintained.

If you have any queries about the questionnaire, please call Quality Health via their FREEPHONE helpline number on 0800 783 1775 or by email.

Quality Health Data protection : www.quality-health.co.uk/data-protection

Thank You. 

Click here to complete the survey

 


Patient and Public Involvement in Research

Share your unique experiences of diagnosis, treatment and care.

Research on the effects of treatments has often overlooked the shared interests of patients, carers and clinicians. As a result, questions that they all consider important have not always been addressed. But this is changing. There is growing evidence that by involving people with lived experience of a particular condition the quality of research can be improved.

This means moving beyond thinking of patients as participants in a study, but as partners to help shape our work and the work of researchers by sharing their experiences of diagnosis, treatment and care.

Why is your involvement important? 

People who each have a personal connection to neuroendocrine cancer, including patients, carers, and loved ones have a diverse range of views and experiences. Sharing these unique insights with researchers by getting involved in a variety of involvement opportunities helps ensure that only the highest quality research is being conducted.

How can I get involved? 

If this is something you’d like to get involved in or if you have any questions, please email us.


Priorities in Research

The NET Patient Foundation and the Association for Multiple Endocrine Neoplasia Disorders (AMEND) are developing a joint research strategy to ensure that each charity’s research funds are directed towards the most appropriate areas of research. As a patient, your feedback is vital in helping us to achieve a strategy that is fit for purpose, realistic and most importantly, based on the priorities of those affected by neuroendocrine/endocrine tumours.

Please take a few minutes to share your thoughts with us about the type of research that you feel should be a priority.

Click here to take part

The Patient Self-Referral Questionnaire

Failing to enrol patients into clinical trials can dramatically delay the development of new treatments. Currently 80% of all clinical trials (not just NET), fail to hit their full enrolment target.

The NET Patient Foundation is working with the iCancer group on a project to make patient enrolment easier and more effective. The Patient Self-Referral Questionnaire represents a radical departure from current recruitment approaches: instead of relying on consultants and their healthcare teams to inform patients about suitable trials, it will put patients at the forefront of the enrolment process. 

If you have five minutes to spare and have any views (extreme, mild or indifferent) about clinical trials, the way they are currently publicised and the ease with which patients can take part in new research, could you complete following brief survey? Your answers will help us to produce a service that NET patients really need, in a form that is engaging, readily accessible and supportive. We intend to launch a pilot version of The Patient Self-Referral Questionnaire in the summer of this year, 2019.

Click here to take part