Born from her own experience of coordinating care for her six year old daughter during the COVID-19 pandemic, Michelle Connor created Kinva to help usher in a new era of multi-disciplinary healthcare aimed at empowering the rare disease community and alleviating some of the stress associated with care coordination.

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

Kinva is a platform that partners with public and private sector health, wellbeing and coaching professionals to enable them to provide whole-person lifecare to their patients and clients. By delivering a tailored, omnichannel approach, we work to connect experts and individuals across all aspects of care: the physical, emotional, mental, and occupational. It streamlines multi-disciplinary inputs, all in one place on the person’s device, and provides a supportive community to make therapy and treatment more targeted, effective and efficient. Truly personalised, secure, connected support for a successful life.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Kinva came about because of my six-year-old daughter, Lydia. Five years ago, when Lydia was diagnosed with the ultra-rare disorder, Kleefstra Syndrome (KS), there were around 400 others diagnosed worldwide. We were given limited information about what we could expect for her future, and a fairly grim prognosis that she might never walk or talk. She was eventually referred into local OT, physiotherapy and speech therapy, but we learned quickly that standard therapy services in most countries are in short supply, disjointed, inaccessible, and have inconsistent results. We also realised that it takes more than just the traditional clinical approaches to address ‘lifecare’; the whole person. We had to find experts in four different countries to help her, and with the support and help we got for her, we are grateful that Lydia is now running and talking.

There is no doubt that the pandemic has intensified the need for digitisation of services, where possible. Our experience was that almost all of Lydia’s local therapy provision stopped completely due to COVID-19, again highlighting that health services and professionals had no secure way to communicate with their clients. As we move out of the pandemic, there is a severe shortage of health staff. Waiting lists are long and appointments are sporadic. Clients, when they are seen, are not given tailored plans after they leave the clinic. Costs are high and patient outcomes need to improve. There is a huge health and wellness inequality going on globally in terms of accessibility to the right care at the right time, and we want Kinva to change that.

2.

How does your business benefit the rare disease community?

We have developed the Kinva platform by not only working closely with health and wellbeing professionals, but also with patients and carers, many of whom are in a similar position to our family. As the parent of a child with an ultra-rare syndrome, I am acutely aware of how it feels to receive a diagnosis, and then not know what to do next. And how overwhelming it can be to have to manage and organise multiple, siloed health and wellbeing professionals in your life.

Kinva empowers the rare disease community, their families, and carers to access and connect with the expert help that they need, when they need it, without geographic limitations. It allows patients and carers to understand exactly what they need to do every day to ensure the very best outcomes in terms of rehabilitation, therapy, or treatment. Kinva facilitates the encouragement and support you need as a rare disease sufferer or carer to improve your health and wellbeing outcomes.

One of the hard things about having a rare condition is the feeling of isolation and having to tackle it on your own. For that reason we wanted Kinva to be a global community platform. Professionals not only connect directly with an individual, but they can also create their ‘kin’—groups and communities supporting each other.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

We’re based in the UK, in Northern Ireland, where we’ve been very fortunate to create a team of highly skilled and experienced people who are really passionate about what we’re trying to achieve. We’ve received support from a variety of experienced local business leaders and early-stage support organisations, notably through AwakenHub’s inaugural SheGenerate programme this year which is for female founders on an all-island basis, and also from Tech Nation in encouraging us to scale rapidly.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

I think if you ask any working parent it is always a challenge to maintain a balance between all of your competing responsibilities. In many ways managing Lydia’s therapies over the years has made us very adept at juggling those responsibilities; the importance of being organised and knowing what to prioritise and when is vital. Building and managing Kinva within the context of Lydia’s health demands is very much a team effort between my husband and me and our wider family. We’ve had a good routine for several years, and we’re very proactive about her health, from her therapy right through to her daily nutrition, so we try our best to be preventative, keeping her as healthy as we can. I also feel that I can work hard on Kinva knowing that she is being well supported at her school and by the various therapists that she sees regularly.

As a carer and founder, I also never underestimate the importance of looking after my own health (as much as you can in such a busy environment!). I try to eat reasonably healthily, get out into the garden when weather permits, and fit running into my week at least once or twice. And, of course, having two young children tends to keep you fairly active too!

5.

What advice do you have for someone starting their own business?

Be prepared for the rollercoaster! There will inevitably be long days, good times, and challenges, but that’s all part of the journey. If you can, find a coach or mentor that you connect with as they can make a huge difference to your performance. Don’t try to do everything yourself but acknowledge where your own weaknesses are and try your best to work with and listen to people who excel in those areas. And the same applies to all the necessary domestic stuff—make your life easier and get the right support at home, where you can.

6.

What are the most rewarding aspects of establishing and running your own business?

It’s very rewarding to have a “tech for good” business in digital health, especially as Kinva makes a difference to both health and wellbeing professionals and their clients. The more people we onboard, the more we feel like we’re making a difference. It’s very satisfying to think we are helping people access much-needed expert health and wellbeing care at a time when health professionals and systems are under more pressure than ever.

7.

What would you consider to be the greatest achievements of your business thus far?

We love getting positive feedback from the various professionals and patients that we work with. At a very early stage, we had a massive boost to our confidence when we won a grant from Innovate UK, which allowed us to fast-track our development. It validated what we were trying to achieve. More recently, we were thrilled to be named as one of the top 20 tech ‘Rising Stars’ companies in the UK by Tech Nation.

8.

What advice would you give someone considering working in the rare disease space?

Invest time early on in meeting, talking to, and understanding the individuals behind the diagnoses. It’s so important to get to know people on a personal level, and to avoid a ‘broad-brush’ approach to the community. I think if you really empathise with the individuals and what they and their families go through, you will have a product or service that works well for your audience, and a lot more credibility to work within the space.

9.

What are your hopes for the future of your business?

We have an exciting roadmap to incorporate AI to help make treatments and therapies more efficient and effective, and to provide greater support to both professionals and patients.

Effective whole-person therapy and lifecare has given my disabled daughter skills we never thought she would have. Through Kinva we want to enable people all around the world to access expert help at the right time. Ultimately, we want Kinva to be everyone’s lifecare wallet, where they manage all of the experts in their life—health, wellbeing, coaching, mentoring—so that they can live the most successful life possible.

10.

If you hadn’t founded Kinva what was Plan B?  What did your 10-year-old self want to be?

I genuinely don’t feel like I have a ‘Plan B’. “I’m all in”, as they say. I originally studied law (probably because I watched too much ‘Ally McBeal’ when I was younger!), and I worked in various government departments as an advisor for many years, including health. While I enjoyed my various roles in the public sector, I would find it difficult to go back to it. I just love what I do now.