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10th October 2018

Call to industry – Welsh Rare Diseases Implementation Group

The Welsh Implementation Plan for Rare Diseases was updated in July 2017 and re-affirms the Welsh Government’s commitment to empowering those with a rare disease in Wales, aiming to ensure those affected by any kind of rare disease have timely access to high quality pathways of care. The Rare Disease Implementation Plan and Annual Update 2017 is available here. The UK Strategy for Rare Diseases is available here.

The Welsh Rare Diseases Implementation Group (RDIG) supports the implementation of this plan and includes broad representation from each health board in Wales, Welsh Health Specialised Services Committee (WHSSC), the Rare Disease, the Genetics Alliance charity and a patient representative. The RDIG receives no direct funding and the secretariat for the group is provided by officials from Welsh Government and representatives attend from their own organisations. The RDIG and its supporting plan have stimulated progress across the rare diseases agenda, including increasing the profile of rare disease care and improved representation within each health board’s Integrated Medium Term Plan.

NHS Wales / industry engagement

NHS Wales has planned integrated health and social care systems which are supported by all-Wales standards, shared services and national digital systems. This structure provides a strong platform for innovation, with opportunities to create constructive joint working between NHS Wales and industry partners.

Prudent Healthcare enables NHS Wales to work with industry partners to identify areas of need and opportunity, design and develop new ways of delivering healthcare services, and measure real world improvement impact, focused on outcomes, through the controlled implementation and evaluation of redesigned services. These projects should be needs-led and outcome focused, using an applied research and development approach to measure in real time their impact on:

  • Improving healthcare outcomes for patients and the public;
  • Improving patient experience of an engagement with healthcare services;
  • Improving the resource efficiency of NHS Wales and other healthcare providers;

By doing so, projects will:

  • Demonstrate new products and services, building an evidence case foe their wider adoption and/or further development;
  • Develop new insights, understanding and knowledge, including potentially exploitable intellectual property;
  • Develop and validate new product pathways and outcome-based reimbursement models, which better align the interests of industry and healthcare providers;

Call to industry and third sector partners – Collaborative support to achieve the priorities of the Welsh Rare Diseases Implementation Group

The Welsh Implementation Plan for Rare Diseases provides us with a good starting point for NHS Wales / industry partnerships, with a nationally agreed plan, pre-agreed priorities, expert implementation group membership, network support, direct access to government officials and visibility at a ministerial level, including annual meetings with the Cabinet Secretary for Health and Social Services.

The Welsh Rare Diseases Implementation Group (RDIG) is issuing a call to industry partners to jointly support achieving its priorities to:

  • Identify and improve the pathway for patients with unknown or delayed diagnosis;
  • Ensure better use of patient feedback, best practice and evidence to improve pathways for primary, secondary and specialist services;
  • Improve reporting of rare disease information including epidemiology, significant event analysis and shared learning.

THE RDIG INVITES INDUSTRY AND THIRD SECTOR PARTNERS TO SET OUT, IN CONCISE PROPOSALS, HOW THEY CAN SUPPORT THE DELIVERY OF THE RDIG PRIORITIES ABOVE.

The RDIG priority is to secure joint financial support for dedicated national Rare Diseases infrastructure, a programme manager post and session time for a national clinical lead. These posts would concentrate on joining up rare disease diagnosis, treatment, care and research across health and care in Wales. This work would include collaboration with other Welsh Implementation Groups and with appropriate partners at UK and European levels. £200,000 per annum for a period of three years would fully fund a programme post, targeted clinical time, communications, T&S and project support.

A financial collaboration between a number of industry and charity sector partners to fund these posts would particularly be welcomed. Not only would this be a strong collaboration story, but National and/or Government match funding could also be available in the case of a number of partners and robust, joint proposals.

Investment in an all Wales programme/coordinator post would bring the following benefits:

  • Improved diagnosis of rare disease patients, resulting in faster/longer access to appropriate rare disease drugs.
  • Improved rare disease data collection, analysis and use, which could assist with pathway development and industry research.
  • Easier access to Welsh rare disease populations; Wales’ population stands at 3.063 million (2011) and its rare disease population estimates range from 150,000 – 250,000 people.
  • Improved and focused collaboration with rare disease clinicians, researchers, commissioners, Welsh Government officials and Welsh Ministers.

This call to industry will be taken forward through the following phases:
Phase 1 – Issue of call requesting proposals: call will open from 8th October until 9th November 2018.
Phase 2 – Proposals will then be assessed by a panel of RDIG members and preferred partner(s) selected. w/c 19th November 2018
Phase 3 – Selected partners will be invited to meet with the panel to discuss and agree scope, location, shared inputs and resources through a draft project plan. W/c 3rd December 2018
Phase 4 – An industry engagement sub group of RDIG will be set up to work with successful partner(s) to implement a jointly agreed project plan. By end of December 2018.

Key principles to be applied:

  • All joint working is on a non-exclusive basis and partners are free to work with others, subject to appropriate terms on confidentiality and non-disclosure.
  • Partners commit to work together up to the end of each phase. There is no obligation to support projects through subsequent phases. Project progress is managed through a clear governance and approval decision point at the end of each phase.
  • Openness and transparency: individual participants must disclose all relevant interests; partners must commit to working on a basis of trust and candour.
  • Partners contribute assets (e.g. data) solely for the purposes of joint working, with no right granted to other participants to retain or to use assets for any other purpose or beyond the life of the project.
  • Partners retain their pre-existing intellectual property; new intellectual property created through the joint working is owned by the industry partner(s), but can be used freely by NHS Wales.

Industry partners who are interested in applying should submit proposals of no more than four pages to Sam Wallis (RDIG secretariat) at sam.wallis@gov.wales by 9th November 2018.