Patient Leaders
This entry has been selected as a finalist in the
Innovations for Health: Solutions that Cross Borders competition.
The Centre for Patient Leadership will provide learning and support to patients and service users so they can truly influence change in health and healthcare.
About You
About You
First Name
David
Last Name
Gilbert
Twitter URL
@InHealthAssoc
Facebook URL
About Your Organization
Organization Name
InHealth Associates
Organization Website
Organization Country
United Kingdom, BNE, Herts
Country where this project is creating social impact
United Kingdom, BNE
Is your organization a
For‐profit
How long has your organization been operating?
1‐5 years
Has the organization received awards or honors? Please tell us about them
No
References - Please provide two references with a two-sentence biography, email address, and phone number for each
Rachel Matthews, CLAHRC in NW London (r.matthews@imperial.org.uk) - has funded our learning programmes
Julia Weller, Director, Family Centre, Croydon. familycentre.fieldway@virgin.net - participant who was impressed enough with our programme, that she funded another one
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Innovation
Select the stage that best applies to your solution
Growth (your pilot is up and running, and starting to expand)
How long have you been in operation?
Operating for 1‐5 years
The Need: What problem are you trying to solve?
Health services face unprecedented challenges. But patients are seen as the 'problem' and are an untapped resource. Professionals (clinical/managerial) fail to recognise patients as leaders who can co-produce solutions & current approaches to engaging patients and the public fail to achieve significant impact. Few services are organised, run by, or influenced by patients or users. Current approaches to building the capacity of patient representatives, activists and community leaders are ad-hoc & under-funded. Patients feel isolated & disempowered. What is on offer does not meet practical or emotional & psychological needs. Patient leaders lack the knowledge, skills and confidence to build dialogue, create trusting relationships, influence power, enhance accountability & improve services.
The Solution: What is your solution? Be specific!
The Centre for Patient Leaders will:
(a) provide learning and support for patient leaders (those seeking to transform services and those leading health improvement in the community)
b) develop an online network and community of practice for emerging patient leaders
(c) be a pool of talented and high quality patient leaders, from which health organisations can draw to input into health improvement activities
(d) be a social movement for change that challenges and alters the fundamental power structures of health care
(e) Enable 'graduates' from The Centre to become accredited Coaches and Facilitators. They can then earn an income through The Centre that fits in with their lifestyle and health needs. They will also become role models for the empowered, creative, proactive and facilitative approach to change that we are hoping to promote within their local communities.
For more information, see: 'The Rise of the Patient Leader' at www.inhealthassociates.co.uk/articles
The Model: Walk us through a specific example of how your solution makes a difference; include your primary activities
We run learning programmes, action learning sets, telephone coaching &(in the future) online learning programmes for patient leaders. Our major offer 'the effective patient leader' is a five session learning programme consisting of action learning, skills-based sessions & telephone coaching. We have run seven such independently evaluated courses that achieved significant outcomes (for individuals and organisations) and have about 80 alumni.
We develop the personal management and leadership capabilities (including resiliency, self-efficacy, motivation, confidence) that allow patient leaders to lead change & practice these qualities on an ongoing project/initiative. We focus on supporting them to to take control of their lives and futures.
Participants have included:
- community leaders who successfully developed community projects, such as nutrition clubs for people from black/ethnic minorities; setting up drop in centres for elderly people; projects on behalf of people with HIV; mental health service user forums, etc
- patient representatives with increased confidence to challenge decision making and push for service change (e.g. a Hospital Governor who was able to input into quality issues; an activist who developed a project on diabetes self-help that received local authority funding;
- individuals with particular conditions progressing by taking up opportunities in fora, project, patient organisations etc
In summary: We offer Patient Leaders support to make a difference through (1) learning (2) connection to a community of practice (3) ongoing support
The Marketplace: Who are your peers and competitors? Identify others also working to address the needs you are and what differentiates you from them. What challenges could these players pose to your success or growth?
Few organisations provide 'training' for patient representatives and even fewer have identified 'patients as leaders'. Where training is provided for patient representatives, this is often based solely on the needs of the institution and is didactic and depends largely on providing people with knowledge of the 'system' rather than the skills necessary to negotiate their way around or deal with power.
Our competitors largely focus on building the capacity of organisations and health professionals - not the capacity of patient leaders themselves. Or they focus on the 'techniques' of engagement and do little to shift cultures and systems.
We are committed to empowering a community of practitioners (patients) who will co-create the future success of the Centre for Patient Leadership
This Entry is about (Issues)
Social Impact
Founding Story: We want to hear about your "Aha!" moment. Share the story of where and when the founder(s) saw this solution's potential to change the world.
My mental health problems were my major personal crisis. When I recovered, I wanted to change things for the better for others. I became a patient representative and policy advocate. But I received no learning, support or further opportunities. Meanwhile, health professionals with whom I worked received continual professional development and organisational support. This venture provides the learning and support that I needed, but never got. (David Gilbert)
I developed severe RA in my early 20’s. I got little support from the Health Services. I was seen not as a person living with Arthritis but as a set of symptoms and physical ailments to be treated and ‘cured’. When I was treated the system seemed geared to the needs of the medical/health professionals. Rarely was I asked about what I needed or wanted. I realised that if I wanted things to change then I needed to go on my own personal journey and find others who I could work with who had a similar experience to me. Mark Doughty
Please describe the goal of your initiative; outline what you are trying to achieve
We want to:
-enable individuals to develop their confidence and self belief and develop the skills to make effective changes in their own lives and develop the skills of self leadership.
- ensure that patient leaders (those seeking to transform the system or their community's well-being) receive the knowledge, skills and behaviours necessary to influence change
- change the balance of power in health and healthcare so that patients and professionals can better share decisions
- provide a high quality resource (patient leaders) able to support constructive improvements in health and healthcare
- ensure that health and healthcare improvement is sustained in the current political and economic climate
- Create role models and mentors that inspire others to make changes in their lives
What has been the impact of your solution to date?
Independent evaluation and outcomes yielded are at several levels:
- better understanding of systems, increased abilities to cope with professionals and power issues, enhanced ability to ask powerful questions that can influence change.
- participants report significant improvements in health and well-being, increase in confidence, self-esteem and ability to influence change, decision making and in their own projects
- organisations report that participants display improved capabilities in the organisational environment
- there are reports of improved decision making (transparency, accountability) and changes in services
- User involvement has increased and cultural change taken place in organisations to which individuals belong
- examples include: participants funded for diabetes peer-education project; one invited onto Ministerial Advisory Group for mental health; one set up older people drop-in centre; another now on national task force for commissioning sickle-cell services
What is your projected impact over the next five years?
We would like to be able to have delivered at least 100 learning programmes across the UK and to have delivered half that amount in other countries; our learning network would be international and have delivered online learning programmes and resources to several hundred patient and community leader around the world; from within our network, we would have trained up at least 50 leaders able to deliver their own programmes; our network of patient leaders would have contributed to at least 200 local and national involvement projects around the world and will have developed a community of practitioners who have a positive impact on the health within their communities and how it is being organised and managed.
Winning entries present a strong plan for how they will achieve and track growth. Identify your six-month milestone for growing your impact
Develop a strong online presence for the Centre and further develop our curriculum offer and our business model
Identify three major tasks you will have to complete to reach your six-month milestone
Task 1
Recruit online development manager or find the support to help us develop the online learning vehicle and web presence
Task 2
Develop a marketing strategy and identify target market for beneficiaries (patient leaders) and customers (funders)
Task 3
Develop online resources and materials for target market including the Train the Facilitator and Coach/Mentor programmes
Now think bigger! Identify your 12-month impact milestone
Develop package of learning offers at scale (UK-wide) that includes face to face and online learning and fund our business model
Identify three major tasks you will have to complete to reach your 12-month milestone
Task 1
Recruit a business manager and have five patient leadership programmes funded and running with five strategic partners
Task 2
Train the Facilitators and Coach/Mentor programmes funded and run successfully at least once.
Task 3
Successfully be marketing our vision/work in Wales, Scotland and Ireland and be able to match capacity to demand
Sustainability
Tell us about your partnerships
We have been funded by a variety of local organisations, such as the CLAHRC in NW London, Croydon Voluntary Action and NHS Hammersmith and Fulham. We are in discussions with the CLAHRC about partnerships. We are also in discussion with several patient and voluntary sector organisations (e.g. Turning Point, National Rheumatoid Arthritis Society, MIND), Leadership Academies and a range of Clinical Commissioning Groups. Together with the Centre for Innovation in Healthcare Management in Leeds University, we are working on a research inquiry into patient leadership and patient entrepreneurs.
Are you currently targeting other specific populations, locations, or markets for your innovation? If so, where and why?
Our work covers a broad spectrum of Patient Leaders. In turns of customers, we are considering approaching the private sector as funders. We think that Hospital Foundation Trusts and large charities may also be keen to develop their own 'lay' leaders within their specific environments.
We wish to target charitable/voluntary organisations in order to develop strategic partnerships so that we can offer patient leadership programmes tailored to their memberships. With the possibility for then developing accredited facilitators and coaches to ensure that they self manage its future growth.
What type of operating environment and internal organizational factors make your innovation successful?
We need to build infrastructure and develop our marketing potential in order to make a stronger business case for the work amongst health and healthcare organisations.
Our commitment to collaborative working includes giving people who get involved with the Centre the opportunity to guide its development. This co-production approach reflects our belief in empowerment and desire to see equal partnerships in health care between professionals and service users.
We will create the cultures and systems necessary internally to sustain this co-production approach. This includes also working only with trusted high-quality partners (individuals and organisations) committed to our values and ethos.
Please elaborate on any needs or offers you have mentioned above and/or suggest categories of support that aren't specified within the list
A key learning will be how to push forward collaborative ventures between our work and the private sector in order to create a win/win for both parties that stays true to the underlying values and principles that guide our work.
One of our key offers to be stressed is leveraging participants abilities to deal with complexity and change which comes as part of their daily living with their Health.
 | 70 weeks ago David Gilbert updated this Competition Entry. |
| 71 weeks ago David Gilbert updated this Competition Entry. |
| 71 weeks ago David Gilbert updated this Competition Entry. |
| 71 weeks ago David Gilbert updated this Competition Entry. |
| 72 weeks ago Kristin Jerger said: Glad to see your work was selected as an early-entry prize winner! Empowering individuals to drive healthcare is healthy. I wish you ... about this Competition Entry. - read more > |
| 74 weeks ago Kristin Jerger said: If you get a chance, David, check out the "Self-Care Clubs" entry for this competition. The central idea is individual empowerment to ... about this Competition Entry. - read more > |
| 79 weeks ago David Gilbert updated this Competition Entry. |
| 79 weeks ago David Gilbert submitted this idea. |
