Hey {{first_name}}

The biggest difference between ProofStack and my previous consulting business has been the theoretical framework that sits behind all we do. After a bit of initial imposter syndrome I’ve now presented the Evidence Stack to over 100 people from founders to engineers and data scientists, and so far, it seems to be holding up. Many people have shared that they’ve found it a useful way to organise how they think about proving what matters and going beyond vanity metrics or prestige journal logos.

Over the past few issues we've worked through every layer of the Evidence Stack up from governance through to distribution. This issue is about the part that wraps around all of it, which is narrative. Why are you here? Lauren, who helps me put Proof Points together, called it the wrapping paper on your evidence. I haven't been able to think of it any other way since.

Previous edition: L4 Distribution

Ask a digital health founder how their product was built and they will happily talk for an hour. Investors get the clever features. Customers get the validation study. What almost always goes missing is the part that holds people's attention, the wrapping paper which holds all the goodies together.

Take a mental health tool. The pitch usually opens with a statistic about how many people live with depression… The numbers are real and the need is real, but none of it tells me WHY this is important enough for you to have put your life on hold to fight for it.

That matters because people work with people. Even inside a company, you are working with colleagues whose motivations you need to understand. In health it matters more than usual, because there is a lot of suboptimal motivation. We all live in health systems where somebody profits at the expense of outcomes, and where a company can wear a cloak of patient centricity while looking for the quickest exit available (Buyers, clinicians and patients have all met that company before).

A genuine motivation is what keeps you going through it.

I'm talking about the narrative.

The most common is lived experience. You got a serious diagnosis, learned to manage it, and built a community. That narrative more or less answers itself. These are often the most common narrative origins.

Second comes frustration with the system. A parent tried to get their child diagnosed and found the whole process broken. Someone cared for a parent with dementia, was surprised at how poor the infrastructure was, and thought, sitting there, that they could do this better themselves. So they did.

Third is the serial founder: “I've sold two businesses that look like this one, and this is my third.” Investors find that very appealing. Users, patients and health systems tend to find it less moving.

The fourth is the clinician who wanted more impact. The space has plenty of physicians, former physicians and allied health professionals who tried working within the hospital system, realised they could only see 20 patients a shift, and wanted to do more.

Each of those has a shadow.

A lot of clinicians are drawn to health tech by burnout. They have put in thousands of hours of training, they are exhausted, and building an app looks like an easier way to get things done.

On the capital side, a group of investors will sometimes anoint a safe pair of hands to take over a healthcare business. Those people are often very good managers and operators. They may have no particular passion for the condition. Sometimes that is fine, because a maturing organisation can need someone more detached to bring discipline.

The mission-driven founder has a shadow too, and it is impatience. All change depends on the unreasonable person demanding it, and I mean that as praise. The same people can drive their teams so hard that they recreate, inside a startup, the burnout culture many of their staff left traditional healthcare to escape.

The other thing founders rarely say out loud is the end goal. An IPO, an acquisition, or a small and comfortable corner of the market. Some companies are now set up as public benefit corporations or social enterprises because they want a social return on investment alongside the financial one. Any of these can be a fine answer. Your team ought to know which one it is.

Your narrative sets why you are building an evidence stack at all. Some companies produce evidence because they have to, and some because they want to.

I’ve never seen it tested properly, but I’d bet the strongest predictor of whether a digital health company publishes high quality research is whether one of its founders has a PhD or medical background.

My read is that it comes down to motivation. A founder whose main aim is a return for investors may see little point in publishing, since it isn't always a direct route to market, and proprietary data feels safer kept in-house. A founder who believes the system needs changing sees publication as a way to make change that could outlive the startup.

I spent 13 years at PatientsLikeMe, so forgive me for reaching for it. Ben and Jamie Heywood started the company after their brother Stephen was diagnosed with ALS at 29. Jamie had already founded the ALS Therapy Development Institute, a nonprofit biotech research lab, out of frustration at how slowly research moved. Ben came from more of a business background and cared less about a cure for future patients than about helping Stephen manage his condition right now.

What we all shared was a belief that patients sharing data with each other was powerful. That belief shaped the website and the business model. It also explains why we published so much, over 110 papers in leading journals like Nature Biotechnology, Neurology, and the BMJ. The idea we were trying to overturn was that only doctors and scientists can collect meaningful data, and the best way to prove the system wrong was to publish evidence on the system's own terms and beat it at its own game.

The same lens works on your competitors. When you read their claims, ask what their narrative is. Some are being self-critical and humble and trying to improve things beyond themselves. Others want to cover themselves in glory and win a couple of deals by the shortest route.

Here is an exercise we run with clients. Send each member of the senior team a direct message with one question: why are we doing this? What are we all here for?

It has to be a DM. In a shared channel, everyone reads the first answer and drifts towards it. If you would rather do it live, get everyone on a Zoom call to type their answer into the chat and tell them nobody hits enter until you say go. It's the modern version of Post-it notes in a meeting room. Then read them side by side. If the narratives don't line up, the incentives probably don't either, and the motivation will follow.

It's worth running on yourself first. I did, after watching Simon Sinek's TED talk on starting with why, and kept asking myself why until I ran out of answers. Where I landed was that my mum was my why. She had rheumatoid arthritis, and as a child I would often go with her to the doctor's. They couldn't work out how best to help her. The blood tests, the scans and the numbers never quite matched how she said she was feeling. A great deal of what I've done since, in measurement medicine and in bringing the patient voice into research, goes back to those appointments, and my “why” is about building systems that fight back against that helplessness.

A second exercise is to read what third parties have written about you: press coverage, blog posts, the bio an event host reads out before you go on stage. Notice how they describe you. If their version of your story differs from yours, find out why.

Founders are often wonderfully articulate when interviewed live on a podcast, and then none of it shows up in the company's messaging. In our experience the best home for a company's narrative is editorials, opinion pieces, commentaries and letters to the editor.

In 2014 I wrote one for The BMJ with Jamie Heywood and our director of data science, Tim Vaughan, called Subjects no more. Its argument was that patients in clinical trials hold the power, and not just in the sense of statistical power. They generate the data that multibillion-dollar pharmaceutical companies depend on, and yet they are rarely treated with respect. That piece is where our narrative and our data-driven product met in public.

The clinical and scientific press is a good venue for this, because the whole point of research is to improve things. You are preaching to a choir that also wants change so drawing your line in the sand there also sets you apart from competitors.

At ProofStack we often work alongside the Chief Marketing Officer, PR agencies and communications teams to shape that narrative through press releases, LinkedIn, webinars and podcasts. Conferences matter most of all, because the panels you're invited onto and the talks you give say a lot about what you stand for.

In September, the Phase 3 FUSION trial of ulefnersen, a trial I worked on a few years ago, read out a successful result for people living with FUS-ALS. It's a rare genetic form of the disease that often strikes young people and progresses fast. If regulators approve it, ulefnersen would be only the fourth drug to slow the progression of ALS, and the second to target a gene.

Working on an ALS drug that actually works has been on my bucket list for 25 years. I wish it hadn't taken this long, and I'm very glad it has happened.

It also makes the case for genetic testing to become the norm for everyone diagnosed with ALS. A gene-targeted drug only helps the people who know which gene they carry, which is the problem I worked on at Sano Genetics.

It is bittersweet, because so many of the champions who fought for this are not here to see it. Our hearts go out to everyone who loved Brooke Eby, the ALS advocate who died earlier this month at 37. Brooke made her life with ALS visible to millions on social media and built a community where people with the disease could find each other. If you don't know her story, this New York Times piece is a good place to start.

I’m looking forward to speaking at BMJ Future Health Europe, taking place on 29–30 October at The Brewery, London.

Across two days, healthcare leaders, clinicians and innovators will come together to explore the challenges and opportunities shaping the future of health and care, from AI and digital transformation to healthcare innovation, patient involvement and the future of care delivery.

Receive 20% off the standard ticket rate using my code FHEWICKS20 at checkout.

Explore the programme and book your place!