The transformative power of digital partnerships

I have lived with the long term chronic incurable condition Crohn’s disease since I was 12. After more than 20 surgeries and intestinal failure, just two years ago at the Churchill Hospital in Oxford I became only the 11th person in the UK to undergo a small bowel transplant.

‘When Facebook mounted its organ donor campaign, there was a 21 per cent rise in 24 hours of people signing up for organ donation’

In the lead up to the transplant I turned to the world’s busiest doctor − Google − for information. But there was very little online and so, with no real plan other than to keep family and friends informed, I started a blog.

My blog was my first interaction with digital technology in healthcare. Two years on and it now has 85,000 followers due to the incredible partnership I have been able to form with my transplant team.

The team used the blog to track exactly what was happening to me. It was not just about what the machines and blood results said: it was more about how was I coping mentally. Was the pain really under control? Did I really understand what I was taking the medications for? What was the impact on my family?

The site was passed to medical students and then it started to be read by patients and their families globally. Four patients have now had successful bowel transplants as a result of it and associated articles, one within a month of making contact with me.

Tweet campaigns

On World IBD Day I conducted my first retweet campaign, which reached 2 million tweets. From there the first online community was built with a fellow Crohn’s patient, and within 24 hours we had over 500 patients join the Facebook group Bowel Disease One Global Family. This was the true power of peer to peer interaction. Aside from your doctor, the next best people to discuss your health issues with are undoubtedly fellow patients.

‘With patients coming from all parts of the country it makes complete sense to connect via Skype’

Twitter reported that tweets relating to healthcare have increased by 51 per cent in 2012 and health trends are now being able to be predicted on Twitter in the way Google predicted flu trends. When Facebook mounted its organ donor campaign, there was a 21 per cent rise in 24 hours of people signing up for organ donation.

However, the biggest benefit of tweets is to help deliver patient engagement. The first tweetchat that I established was the Sunday morning #IBDCHAT, aimed at bowel disease patients. I now have the privilege of being the patient lead on the chat #nhssm (Social Media in the NHS), which is now one of the largest healthcare chats in the UK.

What makes #nhssm so unique is that it regularly attracts a mix of healthcare professionals, patients and people from all aspects of the healthcare system, delivering on true interaction and engagement. If anyone was ever in doubt as to the growth and value of twitter in terms of true patient engagement, then you only have to look at the Symplur Healthcare Hashtag Project. There are over 3,000 Twitter chats − every one involving and often moderated or started by patients.

Power of texts

Before my transplant I engaged with healthcare professionals in a very traditional way. It was usually face to face, occasionally by phone and extremely occasionally by email. At Oxford it was directly via email. I then asked if I could text them and suddenly I was engaging in almost daily text messaging with the transplant nursing team, the dietician and the surgeon.

To this day we text regularly. I get test results sent to my phone and when I had an issue with my stoma I was able to take a picture on my mobile phone and send it to my surgeon for immediate feedback.

‘It takes brave clinicians and management to meet patient leaders halfway’

The way healthcare will be delivered has to change. With the courage and support of the transplant team we now interact using email, text, Twitter and new Skype clinics. With patients coming from all parts of the country it makes complete sense to connect via Skype. The patient can convey all their issues, show any problems with wounds or lines etc and the clinical team can assess what treatment, if any, is needed. This prevents patients having to make unnecessary trips to hospital and enables the medical team to complete a full round in an hour. It will undoubtedly reduce the number of patients who have to come in to hospitals or GP surgeries, saving time and money.

The number of health related mobile apps is also growing massively, with an estimated 40,000 released and a market value of $718m to $1.3bn between 2011 and 2012. The NHS has its own apps library. However, the biggest drop off in using health apps occurs when patients have to continually input data. No surprise there and I think that those who argue differently perhaps haven’t talked to patients.

Life changing app

On waking up from my transplant the first thing I remember was feeling my stomach and touching my stoma bag. I was quickly taught how to change the bag when full. However, what I wasn’t taught was how to stop the leaks, how to prevent the bag overflowing especially at night and how to cope with daily life having lost the sensation of knowing when I was going to have output.

Then there was the issue of my transplant team wanting to know the volume of my output and the timing of it. So there I was, emptying my own waste into a jug so that I could measure it, then noting down the reading on a self-made spreadsheet before cleaning up. There had to be a better way.

‘Patients are powerful people. We deserve a seat at the table where decisions are made’

I worked out that if I could measure the bag as it filled and send that information to another device, then I could create an alert alarm to let me know when the bag was filling. The product that started life in my hospital bed has turned in to a sensor, embracing Bluetooth technology and a free mobile app.

Now every patient can connect this to their bag, set alarms so that their mobile will go off when the bag hits the pre-determined levels and the time of output and volume is automatically captured. It is sent to a cloud-based system and the patient has the choice to let their clinician have access to that information. The patient enters their details once and that is it: Ostom-i Alert was born.

I truly believe that patients are powerful people. We deserve a seat at the table where decisions are made. If “no decision about me without me” is to truly be put in to practice, then healthcare has to be a true partnership, a true collaboration between healthcare professionals and patients. It means patients have to also take responsibility for their care.

In my opinion the biggest change in healthcare is that the power has shifted towards the patient. We are ready to engage, form partnerships, assist on policy and make decisions. It takes brave clinicians and management to meet us halfway.

Michael Seres is the patient lead for #nhssm, a facilitator for the Centre for Patient Leadership and digital strategy adviser to the Patients Association and Oxford Transplant Centre