Workshop on PATIENT PARTICIPATION IN RESEARCH (2018)

Welcome to Workshop on PATIENT INVOLVEMENT IN RESEARCH

DATE: Wednesday 12 December 2018

Maximum of 30 seats - only few left



 Description: 

The national Danish FORSK2015 strategy has underlined the value of public and patient involvement in research. The European Union recommends this approach e.g. in the eHealth Task Force Report (2012), and some of the major research foundations have started requesting it in grant applications.

 A strong interest for the potential in Patient Public Involvement in Research in sweeping over researchers, politicians, policy makers, public agencies ect. in Denmark. But what is the key difference between this approach and the way patients and users have previously participated in research?  Why should we as both quantitative and qualitative researchers get involved – and how do we get started?

 This full day workshop will bring together senior and junior researchers from different research fields and others with an interest in patient involvement in research to discuss the impact, challenges and experiences related to designing and conducting research inspired by or based on this approach

Participants

Senior and junior researchers in different research fields – quantitative as well as qualitative

Prerequisites: None

 

Evaluation:

PhD students should study the course litteratur ahead of participation ind the workshop and present their projects and thoughts on patient involvement in their own project on a poster to obtain 1 ECTS for participation. Please see below for suggested reading.

(details on poster presentation will follow on this page)

IMPORTANT - to recieve ECTS for participation PhD students MUST sign op via this moodle page (other participant signs up via AAUs home page).

Organizer: 

Associate professor Charlotte Overgaard (e-mail: co@hst.aau.dk); associate professor Kirsten Schultz Petersen (email: ksp@hst.aau.dk) and associate professor Anna Maria Balling Høstgaard, (email:annamarie@hst.aau.dk).

Program: 

This workshop will offer uniq opportunity for participation in:

Part 1)  A training session from Dr Kristina Staley, TwoCan Associates, UK 

             international expert on Patient Public Involvement in Research 

Kristina Staley is director of TwoCan and an experienced analyst, researcher and writer. She has a background in biomedical science, gaining her PhD from Cambridge University, and working as a post-doctoral fellow in the USA. She moved into health and science policy working at the King’s Fund and Sussex University’s Science Policy Research Unit, to involve the public in health policy debates. Through working as an adviser at the London Science Museum, she gained considerable experience in making research accessible to the public.

Over the last fifteen years she has worked in a wide range of voluntary and statutory sectors organisations, including NICE, the Health Research Authority, INVOLVE, Parkinson’s UK, and The Mental Health Research Network, to evaluate and develop policy and practice. She is the author of INVOLVE’s seminal report: ‘Exploring Impact: Public involvement in NHS, public health and social care research’. https://kristinastaley.com/

The aim of this session is to raise awareness of why and how public involvement benefits researchers and discusses some of the ways to improve the quality of the process. It will:

      • address the question ‘What’s in it for me?’ for researchers
      • help researchers better understand the value of experiential knowledge and how it works
      • help researchers understand how they can get the most from the patients/ public they work with by improving their conversations and interactions

 

9:00 – 9:15        Welcome and Introductions

9:15 – 10:00      An introduction to public involvement in research – why do it?

                          Presentation by Kristina Staley and discussion

 10:00 – 10:30   Who to involve in your research?

                           Exercise and discussion

 10:30 - 10:45     BREAK

 10:45 – 11:45     How can you improve the quality of public involvement in your work?

                            Exercise and discussion

 11:45 – 12:00     Reflections on the session – what next?

                            Diskussion

12:00 – 13:00      Lunch, networking and poster show

Part 2)

Presentation and discussion of experiences from quantitative as well as qualitative studies using different levels of patient involvement in research

13.00-16.00

Senior researchers from Denmark share and discuss their experiences: 

      • Professor Anne Marie Kanstrup, Aalborg University
      • Professor in Endokrinology, Niels Ejskjær, Aalborg University Hospital
      • Associate professor Charlotte Handberg, Researcher and external associate professor at Aarhus University and DEFACTUM, Midt Denmark Region.


Place: Aalborg University, Niels Jernes Vej 14, room 4-117, 9220 Aalborg Øst. 

Please Note:

This seminar is relevant for both senior, junior researchers and ph.d. students and others with an interest in patient public involvement.

Attendance is free for all participants from Danish universities and public institutions.

For participants from industrial partners or universities outside Denmark the course fee is 2500 Dkr. (if you are a ph.d. student from a international university that accept Danish ph.d. students on PhD courses without payment, please contact the course administration).

Meals and drinks beside coffee/tee not covered on this course but can be purchased at the nearby canteen. 

Deadline: Tuesday 4 December



Important information concerning PhD courses

 We have over some time experienced problems with no-show for both project and general courses. It has now reached a point where we are forced to take action. Therefore, the Doctoral School has decided to introduce a no-show fee of DKK 5,000 for each course where the student does not show up. Cancellations are accepted no later than 2 weeks before start of the course. Registered illness is of course an acceptable reason for not showing up on those days. Furthermore, all courses open for registration approximately three months before start. This can hopefully also provide new students a chance to register for courses during the year. We look forward to your registrations. 

Suggested reading:

Carter et al. (2012) Mobilising the experiential knowledge of clinicians, patients and carers for applied health-care research. Contemporary Social Science, 8:3, 307-320

INVOLVE (2018) Public Information Pack (PIP) 2, How to get involved in NHS, public health and social care research. INVOLVE, Southampton. 

INVOLVE (2012) Briefing notes for Researchers. INVOLVE, Southampton.

Owens et al. (2011) Involving service users in intervention design: a participatory approach to developing a text‐messaging intervention to reduce repetition of self‐harm. Health Expectations, 14(3):285-95

Rose et al. (2011) A model for developing outcome measures from the perspectives of mental health service users. International Review of Psychiatry, 23(1):41–6.

Staley K, Abbey-Vital I and Nolan, C. (2017) The impact of involvement on researchers: a learning experience. Research Involvement and Engagement 3:20.

Staley K. (2017) A link between learning and impact in public involvement in research: implications for evaluation and practice? TwoCan Associates, UK.

Staley K. (2017) ‘Changing what researchers “think and do”: Is this how involvement impacts on research?’ Research for All, 1 (1), 158-167.

Staley K, Ashcroft J, Doughty L & Szmukler G. (2016) Making it clear and relevant: patients and carers add value to studies through research document reviews. Mental Health and Social Inclusion, 20 (1), 36-43.

Staley, K. (2015) ‘Is it worth doing?’ Measuring the impact of patient and public involvement in research. Research Involvement and Engagement, 1, 6.

Charlotte Handberg, Ole Mygind & Jan Sau Johansen (2018): Lessons learnt on the meaning of involvement and co-creation in developing community-based rehabilitation, Disability and Rehabilitation, DOI: 10.1080/09638288.2018.1490461

Useful websites

INVOLVE

INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research, to support active public involvement in NHS, public health and social care research. Offers a source of practical guidance and policy advice. www.invo.org.uk/

 

Research Involvement and Engagement

Open access journal with this focus. https://researchinvolvement.biomedcentral.com/

 

TwoCan Associates

      Public involvement in research consultancy since 2004.

www.twocanassociates.co.uk

Important information concerning PhD courses We have over some time experienced problems with no-show for both project and general courses. It has now reached a point where we are forced to take action. Therefore, the Doctoral School has decided to introduce a no-show fee of DKK 5,000 for each course where the student does not show up. Cancellations are accepted no later than 2 weeks before start of the course. Registered illness is of course an acceptable reason for not showing up on those days. Furthermore, all courses open for registration approximately three months before start. This can hopefully also provide new students a chance to register for courses during the year. We look forward to your registrations.