Parkinson s World A transformational project by The Cure Parkinson s Trust

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1 Parkinson s World A transformational project by The Cure Parkinson s Trust Executive Summary During my time working in the Parkinson s field, I have come to realise there is a patent lack of communication between scientists, clinicians and people living with Parkinson s. There is no doubt in my mind that if there was a single web portal through which these groups could share points of view, understanding, information resources, experience and passion for progress, that this teamwork would unlock the gates to a wealth of new thinking, new ideas and most importantly, pave the way to a spate of breakthrough treatments. Tom Isaacs, Co-founder, The Cure Parkinson s Trust and Parkinson s Movement In May 2016, The October Club selected The Cure Parkinson s Trust (CPT) as the beneficiary for its 2016 charity fundraising dinner held at the Savoy Hotel. On the evening of 12 October 2016, 610,000 was raised to support the creation of Parkinson s World (PW), a global website designed with the primary aim of transforming the discovery of a cure, or cures, for Parkinson s disease. We are incredibly grateful for this generous donation of funds. The purpose of this PW Interim Report is to update The October Club on PW planning activities to date, including an outline of PW s and Phase 1 strategy and to provide assurance that great progress is being made and these funds are being invested wisely. In summary, and following significant engagement with each of the four potential PW User Groups during Q1 of 2017, the following PW value proposition has been defined to reflect the unmet need that PW will seek to address, and the unique value the site will strive to offer: PW is a global initiative with the aim of accelerating the discovery of breakthroughs and a cure(s) for Parkinson s. A symptoms-driven, innovative technology solution, with clear, engaging, valuable and validated content, created by and for people with Parkinson s (PwPs) to: promote global collaboration between PwPs, PwP Significant Others, Healthcare Professionals (HCPs) and Researchers (collectively referred to as PW User Groups); and create a global environment of research-readiness, defined as any activities that promote research within or across PW User Groups by all PW User Groups, with the primary aim of encouraging PwPs to engage and participate in appropriate global research. The objectives that flow from the value proposition above enable PW problem statements, and potential solutions, to be rigorously explored with razor-sharp focus and efficiency, ensuring that funding is appropriately allocated, resources are appropriately deployed and the return on investment to and for each global PW User Group is optimised within the earliest possible timeframe. 1

2 PW Charter A Phase 1 PW Charter has been approved by the PW Steering Committee and presented to the CPT Board of Trustees. This document describes PW s mission and values and Phase 1 key objectives, milestones, risks and risk management. It also outlines the governance structure for the PW project to ensure appropriate levels of oversight for each phase of the development. As a minimum requirement, a monthly update is provided to the PW Steering Committee and approved by the CPT Board of Trustees (quarterly). As set out in the 18 March 2016 CPT Proposal, the funds raised have enabled the recruitment of a PW Program Director and PW Program Coordinator to work with the PW Program Sponsor to: shape the PW vision and strategy; develop a proof of concept/value proposition (i.e. what, where, when, why and for whom); build and test a working prototype; and create a robust Business Case to demonstrate financial sustainability. A further consideration is the legal structure PW is to adopt to optimise global partnerships with PW User Groups and facilitate engagement with commercial stakeholders from a tax and trading perspective. This will be determined by the end of Phase 1. 2

3 PW Strategy Phased Approach The PW project has been split into 4 phases with each phase incorporating additional functionality, content and value to each PW User Group, all of which has been methodically incorporated into the PW Project Plan and PW Product Roadmap: Phase 1: develop a proof of concept, reflecting a sample of global PW User Groups (see below), build and test a working prototype and create a robust Business Case to demonstrate financial sustainability; Phase 2: Soft (Beta) Launch, extend the test group to incorporate a larger sample of global PW User Groups; Phase 3: Hard Launch, with prototype being made publicly available; and Phase 4: Business as Usual (BaU). The timing of each phase is to be confirmed with the aim for Phase 1 activities being completed, including a working prototype, to be showcased at Rallying to the Challenge at the Van Andel Institute in Grand Rapids, Michigan on 28 September Design Thinking Design thinking is a human-centered approach to innovation that draws from the designer's toolkit to integrate the needs of people, the possibilities of technology, and the requirements for success. Tim Brown, president and CEO, IDEO Design Thinking is an iterative process which seeks to understand users, challenge assumptions and redefine problems to create solutions, in the form of products and services, that puts users at the heart of the innovation process. It is an approach that promotes experimentation, prototyping and testing to ensure that the needs of its users are fully met. Key steps, which have been incorporated into our activities, are illustrated below: 3

4 PW User Groups Following the principles of good Design Thinking, the PW team has engaged in a significant number of focus groups and interviews with PW User Groups to help understand and explore the problems PW is aiming solve, together with generating ideas around potentially innovative solutions. We will continue to engage with PW User Groups to ensure that PW is co-created and tested by and creating value for, the users it seeks to serve. The following global PW User Groups have been identified as PW s core audience: 1. PwPs - Parkinson s patients are at the heart of the PW initiative in the form of co-creation, testing and the provision of skills, support and expertise throughout the PW project. They are also our primary users of the PW website. 2. PwP Significant Others - this group includes the PwP community of partners, family, friends and carers. They will also be primary users of the PW website. 3. HCPs - this group includes Allied Healthcare Professionals to include PD nurses, physios, occupational therapists, speech and language therapists, nutritionists, PD Consultants, GPs, Movement Disorder Specialists and Neurologists. We will be working with ParkinsonNet, led by Professor Bastiaan Bloem, to develop this offering. 4. Researchers - this group includes basic, pre-clinical and clinical researchers; researchers into Parkinson s symptoms; and researchers engaged in the adoption of Parkinson s related technology and medical devices. We will be working with IOS Press (publishers of the Journal of Parkinson s Disease), and its editor in chief, Professor Patrik Brundin, including other individuals and organisations (to be confirmed), to develop this offering. As set out in the 18 March 2016 CPT Proposal, The October Club funds are limited to developing the patient element of the PW initiative, to include PW User Groups 1 and 2 above. PW User Groups 3 and 4, and the relating value propositions, are being developed with third parties during Phase 1; the success and legal structure of which will be incorporated into the PW Business Case and Phase 2 PW Charter. PwP problem to be solved Putting PwP at the heart of our proposition, findings to date have generated many thoughtful insights around the issue of research-readiness, including: 4

5 PW Workstreams Throughout the planning stage, the PW value proposition has been developed to address perceived gaps in the Parkinson s landscape. This has enabled the development of a framework upon which to organise activities and objectives, focused around the following themes, which have been incorporated into the PW Project Plan and PW Product Roadmap: Global Reach - to enhance collaboration across and between global PW User Groups; PD Symptoms-focused - to promote the linking of PwP motor and non-motor symptoms to both drug and non-drug clinical trials and research; Technology and Data - to ensure that emerging technologies, as appropriate, are incorporated to optimise data management and provide a smooth PW User Group experience when engaging with PW; and PW User Groups - to promote research-readiness across and between each PW User Groups. PwP-paired working For Phase 1, each work stream has been given a Lead, with clear Objectives and Milestones (with the intention of repeating this approach for each of PW s phases). In alignment with CPT s strategy to include PwP in all aspects of work delivery, the PW initiative has incorporated PwP-paired working, pairing PwP with colleagues without Parkinson s, to facilitate the inclusion of talented and skilled PwPs in the engagement and delivery of PW activities. CPT plans to develop best practice guidelines to encourage, promote and facilitate organisations to develop PwP inclusivity policies and practices within the workforce. 5

6 Funding It is anticipated that The October Club funds will enable PW to complete both Phase 1 and Phase 2 activities. A key deliverable for the end of September 2017, in addition to a prototype, is a fully costed Business Plan. This will enable CPT to determine the funding required to take PW from Phase 2 through to Phase 4 and ensure PW remains a sustainable offering. Reflections on progress 6

7 We wrote our vision for Parkinson s World a year ago. It has been hugely gratifying to meet each of our proposed PW User Groups and discuss the project with them a year on, and to know that our original vision is not only incredibly necessary, but will make a huge difference to Parkinson s and CPT s clearly defined vision to find cures. The October Club is enabling us to unify Parkinson s in an inspirational and innovative way, for which, very many thanks. - Helen Matthews, CPT COO and PW Program Sponsor. It was fascinating to hear the challenges people with Parkinson s have in accessing information about research. If we can deliver this through Parkinson s World we will have reached a core objective. - Leah Mursaleen, CPT Involvement and Research Officer and PW Program Coordinator and Various Workstreams Lead. It is a real pleasure and privilege to be part of such a talented team in the development and delivery of an innovative and global approach to supporting the PD community. Our journey so far has been busy, productive and insightful. We hope that if PW can go some way to addressing the problems and challenges identified so far, that PW will be a significant contributor to the global discovery of a cure. Elaine Finn, PW Program Director. I am sometimes asked why patients should be involved in the expert work of researchers and scientists. Put simply, it s because patients are also experts in their symptoms because they are forced to live with the consequences of their condition. As such, they can bring knowledge and insights to researchers which would otherwise be unavailable. Thus, the research process becomes co-productive. - David Murray, CPT Trustee and Chair of the PW Steering Committee. Next Steps Tom Isaacs will be providing a brief update at The October Club event at the House of Commons on 3 July We will also report back on Phase 1 activities and the status of Phase 2 activities and future sources of funding at the end of