WaihonaPedia support page

Patient and Public Involvement in Research

This page is constructed based on the guidance document: Patient and Public Involvement in JPND Research, January 5 2015, A user-friendly guide for applicants to JPND Calls for proposals, Created in conjunction with DenDRoN, United Kingdom

A. Research Planning

Examples of PPI Actions

  • Organise face-to-face discussions groups with CdLS patients and carers as efficient means to capture lay perspectives on the relevance of your research methods and outcome measures. 
    Each national national member group of the CdLS World federation organizes at least ONE yearly gathering of families in which we can face-to-face discuss the family (lay) perspective on relevance. Bi-anual we organize a world conference to share our national findings.

    With the WaihonaPedia-based-CdLS-World-website we offer an internet platform for families, patients, carers and researchers to discuss various topics of interest. We have discussion support by our national group in 6 languages (English, Spanish, French, Portugese, Italian, German, Danish and Dutch. we can quickly add all the other languages in Europe providing that we have an moderator in that language. )

  • Organise one-to-one interviews for resource-effective, detailed consideration of the prospects of the research attracting funding. Other methods, such as surveys and email, are appropriate for patients or carers who cannot physically travel to meetings, or have speech or cognition problems. 
    With the WaihonaPedia-based-CdLS-World-website we offer a standardized survey about all the known clinical areas of health. Through these surveys we can extract the attention-point areas most relevant for the CdLS community.

    We have proved the value of this system in the Netherlands by asking the community. Most scored topic was the 'self injuries behavior' aspect of CdLS. This allowed the research group to focus on this area related to the various molecular mutations that cause the syndrome

  • Provide opportunities for patients and carers to assist with providing clarity to ethical and informed consent issues, plans for dissemination and implementation of study outputs. This input can increase the feasibility and cost-effectiveness of studies, and their attractiveness to funders. 
    Each national member group of the CdLS World federation organizes at least ONE yearly gathering of families where we welcome the dissemination of knowledge through interactive workshops and/or symposia.

    With the WaihonaPedia-based-CdLS-World-website we have the opportunity to create wiki-pages of the research findings, inviting our families, cares and other experts to share experiences and ask questions

  • For clinical studies, advice from PPI can improve the relevance inclusion and exclusion criteria and appropriateness of a study protocol.
    With the WaihonaPedia-based-CdLS-World-website we have the opportunity to quickly identify new ideas or shortcomings in a research protocol and adapt/adjust accordingly

How to demonstrate in a proposal

  • Demonstrate how you are publicising opportunities for PPI in the development of your research proposal (e.g. distribution of flyers at clinical/research sites, or via patient-representative organisations at local/national level). 
    Each national member group of the CdLS World federation  has a working process of getting printed material to their families (address-lists). IN combination with the medical network of hospitals that can be contacted by the researchers to get additional stakeholder addresses.

    With the WaihonaPedia-based-CdLS-World-website we can easily create webpages for the research proposal to get the attention of the families. We also have access, through our members of the CdLS World federation

  • Provide letters of support from patients and carers that describe the origin of the proposal, the role of the patients in defining the question, outcomes, comparators, and goals/outcomes, etc. 
    With the WaihonaPedia-based-CdLS-World-website it is default, build-in, procedure to provide a digital letter of support that describes the goal of the research, how the family will be supported during the research and what their rights are concerning their data-sharing in conformance with the EU GDPR privacy laws and common research protocols about sharing information
  • Alongside relationships with lay individuals, describe how you plan to establish ongoing working agreements around PPI with CdLS-relevant patient organisations such as medical charities.
    Most of the national member group of the CdLS World federation are registered charities governed by the connected families/patients. By working closely with these national member group of the CdLS World federation we can obviously benefit from the trust they have with the connected families/patients
  • Detail how you will link your PPI planning to your organisation’s “communications” or “outreach” activities.
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B. Research Delivery

Examples of PPI Actions

  • Once an CdLS-related clinical, social or health service study is recruiting, lay people can still contribute creatively on the reasonableness of recruitment strategies, such as the planned approach to how studies are to be explained to potential participants. 
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  • Where studies are failing to recruit sufficient patients, provide opportunities for individuals and organisations to offer insights to help explain poor recruitment and retention rates. 
    In the Waihona study to build the WaihonaPedia-based-CdLS-World-website we have learned that PPI is strongly positively correlated with a RETURN ON TIME INVESTMENT of participating families. As a example have we linked the survey (=Time invested) to a direct benefit: the Emergency Travel card. This card is a personalized card, where the answers to the questionnaires are processed into this card. This card can be taken on vacation and if people need to go to an medical emergency the clinical data on that card will help to protect the CdLS person against wrong assessments.
  • Provide support mechanisms such as mentoring and training of individuals to go out into the community (e.g. through their own patient networks) to recruit study participants and to conduct interviews. 
    By working closely with these national member group of the CdLS World federation we can organize training and education sessions and/or webinars. This will then result in a higher PPI
  • Investigate whether your research-performing organisation could allocate a specific involvement liaison role within the organisation to coordinate PPI links.
    As national member group of the CdLS World federation we would welcome the participating researchers in the CdLS World SAC. And these researchers will be integrated in our CDLS world leaders forum to have direct access to the various groups

How to demonstrate in a proposal

  • Clearly articulate the roles of PPI individuals and organisations in each component of the study, (e.g., helping to draft survey tools and focus group questions, reviewing participant materials for readability, interacting with study participants (e.g., recruiting participants, conducting interviews, leading focus groups, etc.).
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  • Consider the appointment of suitable CdLS lay representatives to steering committees, or management groups in your proposal.
    We propose to have a representative of each national member group of the CdLS World federation in a research-advisory-advocate (RAA) group. From the CdLS World federation executive council Gerritjan Koekkoek will function in the research steering group and he will organize a frequent online discussion with the RAA.
  • Describe how you may discuss with lay people to creatively problem-solve for particular CdLS studies where recruitment/retention may be a problem
    We will focus on clear RETURN ON TIME INVESTMENT rewards that will stimulate PPI

C. Research Dissemination

Examples of PPI Actions

  • Include patients and carers as part of study management and steering committees, to help with dissemination of results, implementation of study lessons. 
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  • Targeted PPI initiatives can help to extend the scope for CdLS research into new community environments, such as promoting CdLS research in care home settings, or addressing informed consent challenges.
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  • Good relationships with patient communities can help with publicity for research projects/initiatives. 
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  • Input from PPI individuals and organisations can help design public-facing information. 
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  • Within the range of lay people identified, some may have communications skills and media relations. Roles can be developed for them around becoming your CdLS research ‘ambassadors’.
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  • If patients with an CdLS perspective, and carers, already have representative roles in a health and social care context, their capacity to become a valuable link for researchers should be encouraged.
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How to demonstrate in a proposal

  • Alongside relationships with lay individuals, describe how you plan to establish ongoing working agreements around PPI with ND-relevant patient organisations such as medical charities.
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  • Clearly articulate the roles of PPI individuals and organisations in each component of study dissemination, (e.g., helping to draft survey tools and focus group questions, reviewing participant materials for readability, designing public-facing information)
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Toolbox for PPI

Guidance on finding lay members for panels, such as Clinical Trial Steering Committees

A lay representative is an individual patient/carer who can provide patient/carer input as a member of a research development/delivery team, or is available for informal advice. An important criterion for lay representatives will be their lived experience and personal association with neurodegenerative diseases rather than their level of knowledge of research. A commitment from researchers to support and mentor lay representatives can overcome knowledge gaps. Carers and former carers are often well-placed to be representatives.

Key considerations:

  • The style and degree of formality of selection processes for individuals depends on the specific role. The core role of a patient/public member of a research operational team could be described as “to contribute to the work from the point of view of someone with direct or indirect experience of a neurodegenerative disease. The most important personal skill for the role is a willingness to bring to our planned research a balanced understanding of the wide range of different perspectives which CdLS patients, carers and the wider public will have”.
  • For many researchers, the simplest route to finding people may be via distribution of flyers at existing clinical/research sites, or more widespread distribution via patient-representative organisations at local or national level.
  • It may be that a face-to-face or telephone interview will allow assessment of an individual’s abilities, interests and relevant lived experience. Minimum criteria for IT skills and educational qualifications can be indicated, also in addition to any necessary confidentiality agreements.
  • It is often appropriate to regard patient/public members as representing their individual viewpoints, even if they are identified via a representative organization.

Guidance on in-depth interview work with individuals/couples

This personalised method is particularly appropriate for people with CdLS who are experiencing communication or cognitive problems. In-depth interviews are undertaken with one, two or three people for ‘reality-testing’ of aspects of your research proposal development. Unlike larger discussion focus groups, in-depth interviews allow detailed consideration by patients and/or carers in order to relate the proposed research directly to their personal knowledge and experience of an illness or condition.

Key considerations:

  • Keep questions to a minimum but do use open questions to encourage the patient/carer to expand their story when appropriate.
  • Broadly speaking, the interviewee(s) will do the bulk of the talking, and the success of such an interview is influenced by the sensitive use of the ‘agenda’ and demonstration of active listening skills by the interviewer.
  • Prompt cards for the interview ‘agenda’ can be very helpful.
  • The duration and timing should be kept relevant to the patient/carer’s needs.
  • An invitation letter could be distributed in specific clinics, or via patient-representative groups, to invite people to consider taking part in such in-depth interviews. A phrase such as “Whether you decide to take part or not will not affect your individual treatment or care now or in the future” should be considered as part of any invitation letter.
  • An ‘agenda’ for discussing an CdLS research proposal, could ask the interviewee(s) to envisage the various stages of the experience of participation in such a study from a patient’s perspective: For example; “imagine being sent to a memory clinic with a provisional diagnosis, hearing of this research study at the clinic, what are your initial thoughts on the research, considering the pros and cons, imagine the process of deciding whether to participate in the research”.

Guidance on running a research discussion group / focus group

An interactive group of patients, carers, members of a research team, all exploring a specific research topic or range of issues, concerning a particular study or a large programme of research.

Key considerations:

  • A loose agenda allows a moderator to structure the discussion productively around key questions without unnecessary restriction.
  • The agenda could, for example, look at study design dilemmas, potential recruitment problems, or examining relevance to patient benefit. Concerns around carer issues and confidentiality can often arise in CdLS research discussions, as well as the appropriate application of inclusion/exclusion criteria for those CdLS illnesses which progress rapidly.
  • Plan appropriate venues and other arrangements specific for people with CdLS conditions. Participants may need prior briefing about the research under discussion.
  • Encourage everyone to actively participate. Prompt cards are particularly useful to assist people with cognitive impairment to follow the flow of conversation.

Using an CdLS patient/carer survey

For CdLS research proposals, ascertaining a range of lay opinions and ideas about research development or delivery can be very useful. Surveys and email consultation exercises are particularly valuable for involving patients and carers who physically cannot travel to meetings, or who have speech or cognition impairment problems.
The aim of this type of involvement is to learn from opinions drawn from lay experience, to strengthen the relevance of the research activity. Deciding on which questions to include will depend on where researchers are most likely to benefit from lay opinions and ideas, and the appropriateness of the content for people living with CdLS conditions.

Short succinct surveys generally have better response rates. The survey covering explanation should include:

  1. A summary of survey aims, time-lines for responses, any confidentiality issues.
  2. A mixture of ‘closed’ response choices and ‘open’ free text questions often works well. Questions should aim to elicit opinions around, for example:
  • the rationale for the research, the overall design
  • explicit uncertainties or problems with aspects of the research proposal, where ‘external’ lay input might help to resolve
  • content of patient information sheets
  • whether the research methodology makes sense to lay people
  • whether a study seems likely to recruit sufficiently quicker/slower in real-life clinical settings
  • potential benefit for patients and carers, researchers, and Member State health and social care systems

Working with Patient Representative Organisations

Each JPND member country has a wide range of directly-relevant charities, disease-specific groups and other stakeholder organisations which can offer valuable avenues for collaboration around PPI in research.

Key considerations:

  • Develop national-level working agreements with representative organisations/charities within JPND Member Countries. This can provide a sound basis for facilitating subsequent local-level working collaborations.
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  • Patient representative organisations may be happy to link with researchers around identifying individuals and groups for PPI activities. Within a charity, there may be a smaller sub-group organized specifically around research activities.
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  • As well as directly relevant medical charities, and disease-specific representative groups, there are other organisations which can contribute to advising and commenting on the design and delivery of CdLS research. e.g. organisations which work generically with carers or involving older people.
    Donec pede justo, fringilla vel, aliquet nec, vulputate eget, arcu. In enim justo, rhoncus ut, imperdiet a, venenatis vitae, justo. Nullam dictum felis eu pede mollis pretium. Integer tincidunt.
  • It is generally helpful to view all patient/public members as representing their individual viewpoints. Patient/public members are usually chosen because of their individual experience. However, in practice, patient/public members may have been recommended by a specific medical charity, and naturally they will often aim to reflect that organisation’s views. Patient/public members should be there to provide their individual views only, unless specified otherwise.
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JPND Goals and Objectives for PPI

JPND Management Board members have determined that PPI should be an integrated part of JPND activities and initiatives as part of the implementation of its Strategic Research Agenda.

A JPND Action Group has been established with the remit to “promote Public Involvement in Research in order to improve the way that neurodegenerative disease research is Prioritized, Commissioned, Undertaken, Communicated and Used”.

The Action Group was expanded in 2014 to form a JPND PPI Stakeholder Advisory Board, with the addition of senior leaders of relevant parts of the international scientific, clinical, healthcare and social care systems. The primary aim of the Board will be to provide rapid and frank feedback and early advice from the broad PPI stakeholder community to JPND in relation to implementation of PPI in CdLS research.

Overall JPND Goals for PPI

Goal 1: to integrate PPI in an appropriate manner in initiatives supported by JPND
Goal 2: to enable the implementation of PPI in national strategies and plans for CdLS research

Specific JPND PPI Objectives

  • to support the development of fundable, deliverable research
  • to support the recruitment of patients and public to research studies
  • to strengthen the CdLS research culture

JPND PPI Actions
In general, PPI actions for proposals submitted to JPND can be divided into two categories:

  • Identifying and maintaining meaningful relationships with patients and the public
  • Developing processes and methods for PPI

More information on JPND PPI activities and strategies can be found on the JPND website

Further sources of guidance for applicants

  • INVOLVE (UK) resource for researchers (click to link to INVOLVE Website)
    An online resource of briefing notes for researchers on how to involve members of the public in research. It includes:
    • supplements with detailed information on public involvement in specific types of research and on specific involvement activities
    • case studies showing how members of the public have been involved in research projects
    • templates of useful documents such as job descriptions and terms of reference for committees and steering groups
  • PCORI Rubric for Patient and Family Engagement
    A similar guide produced by the PCORI Initiative (USA)
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